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Everything posted by spiny

  1. Hi there Gemma and welcome! The symptom you are describing is not one that I recognize as a CH thing. I have heard of and seen the paralysis that you seem to be describing though. I had a boyfriend many decades ago that would get that and it was really scary. I had cluster and he had that. He would not be able to move for 15 minutes? Have you had an MRI done yet? You might want to get one if not. We do recommend that all CHer's have one to rule out other stuff. And some have found 'other stuff' too. What are you taking now for your CH? Are you on any medication currently? Perhaps if we back up a bit, it might help. Can you give us some info on your treatments to date?
  2. Way to go!!! If it isn't working............
  3. spiny


    Pulling for you!! Sound like you doing well and that is terrific. Keep us posted!
  4. Hi Fern and welcome. Glad that you found us! You will find a lot of info in the blue banner above that says New Members.... Avoid MSG, alcohol, fermented foods etc. Eat clean. Msg can bring on one right quick for some. Caffeine: In an Energy drink or shot, V Energy, or coffee. If you can hack the Energy shots, some say the taurine in them is helpful. Otherwise, any strong caffeine. Most want them ice cold. Slam it down - drink quickly, at the very start of a hit. You can hyperventilate too and exhale with a crunch to get rid of the CO2 in your lungs. Many will suck in the cold air from an AC vent in the car. There are proponents of ice packs too. A really hot bath - shallow - helps some by opening the blood vessels in the legs. I have sat in many a screaming hot bath. I just kept adding more and put a cold cloth on my head. Well, cold water type cold. Not ice! Benadryl can help a lot too. Take only at night if it makes you too sleepy. Also, there is Melatonin in the 20-25mg amount. Do not take both at once! Try one, then when you know how it affects your balance, etc. Then you can add the other. Add the Melatonin 10mg to start. Or less. If you get hit at night, then sleep in a recliner with your head above your heart. It will enable you to get up and hitting the caffeine, cold air, hot bath, whatever works for you. We are all different. Some get great relief from an ice cube held against the roof of the mouth on the CH side. How about your experience so far? Share a bit so we can help you better.
  5. Ok. I have to ask, is Bosco an Abyssinian? Appears to be at least partly, if not full!! So pretty. I lost my Tonkinese last September. Age 20! If you can bring yourself to ditch the Dopamax, I think that you will feel better. One thing comes to mind: Is It stopping the hits? NO? Then perhaps it is not for you. Many of us come to that realization after suffering for too long with a medication we thought was helping. I have tried some things for too long thinking 'Well, it is not as bad as it was.' But did I really know that? Nope. Verap worked for me, until I went off one summer due to prodding from my dentist. Guess what? It never worked again!! I could only take 240mg/day due to low BP. So, upping it was not a option for me. As angry as I was , I later figured out that it would have soon failed anyway. And I felt like garbage. I was truly better off in the end without it. Well, we aren't 'putting up with you', we have all been there and understand you and where you are!! Not the average person you meet on the street in that one respect. CH family.
  6. Bosco, I didn't see where you are taking the Vit K. Am I missing something? You have dang high D3 levels. So, that does need to come down. I'm sure that @xxx will check back in soon and provide info there. My first cycle starting the D3 it lowered the intensity of my hits and lengthened the ramp up time a bit, so I could hit the O2 earlier. I did not get to PF status that year. The next year, after staying on the D Regimen for the year, I had no cycle. Fluke? Hmm. Leave off the vitamins for 2-3 days and there came the hits! Back onto the regimen I went. Cycle went away 2 days later. Time came for the next cycle, no cycle. Did I test that one too? Oh yes I did. I wanted to be sure it was the regimen, not just a missing cycle. So, don't loose hope on it! I still test it every year too. The wonder of 'aging out' has NOT occurred. Is your Verap ER or SA? The short acting works better for CH than the extended release for some dumb reason. It does mean taking them 3 times a day, but hey, help is help, right? Have you tried taking Benadryl yet? I don't recall. It helps me a good bit with allergy inflammation and the head. I understand your reluctance to abandon the Dopamax, since you feel that it is helping. This is rather heart breaking at the moment, but answers will be found I bet. Please be sure to take in adequate good fat on Keto! It is what your body will be running on.
  7. Face shield is a good idea Bosco! CHers are allowed to go maskless in some places. Scotland being one! I shop online to save the hassle
  8. Maryo, you might also consider ordering seeds. Cheap, pretty fast, and legal to purchase. Type 'rc seeds' in the search bar to see some posts on it. There are a few places that sell them and one is in NC , with great current recommendations. Dalt is no longer available at all to my knowledge. Upping the D is a great idea! It seems that our need for it goes up when other mess happens. And many are extra low due to the bug keeping us way from vacations and such. As a nocturnal, I will give you my ways of dealing with those hits: Sleep in a recliner, with you head above your heart. Prop up with pillows or whatever to get comfy. You will wake sooner and have less pain. For some it eliminates some hits as well. Grab some caffeine at the first sign of a hit. It can stop some and will assist in dealing with the others. I slam one down heading to the O2. You know how to use your O2 and do your post breathing already, so I will leave that part alone here. Additionally, I have some coffee late in the day - after dinner to help put off the first one. For short term relief, get a Prednisone Taper pack and take it. It should buy you a few days sleep while you wait for the D3 to kick in for you. It likely will give you 3-4 pain free days to catch up on some sleep and let the D3 build up in your body. ATB!!!
  9. There are trials going on currently, I believe, using schrooms for CH and PTSD. A co-operative union of the VA and Yale (or Harvard). Hey, if I don't think about it weekly, I lose a bit! It is being held in the northeastern part of the country. So, 'probably' is a very real statement. So, lock onto that and march yourself forward with a feather in your cap and a smile on your face. It is going to get better - for the first time ever!!! It has already been proven that MM is a 'best' med for CH, that is why it is in trials! There are people on this site who dreamed of and made a reality of going to Congress to get O2 approved for Medicare patients. After some 6-7 years, guess what? It is now being approved for all old clusterheads. No, we have not 'aged out'! Pretty much all forward progress began here, years ago. Many thanks to those who led the way!!!! I am forever grateful. Go to NIH.gov and type 'cluster headache psilocybin trials' in the search bar. You will find some reading material there. This one will keep you busy for a day or two: The Therapeutic Potential of Psilocybin! Enjoy! Oh, and somewhere in there, it will tell you if it is Yale (my vote) or Harvard (cya).
  10. I would fear that bill too. But hey, in Cali you might find a doctor that will prescribe that pool for your CH! Then it has to be allowed, no? Not that I actually know, but it would be fun to do it!
  11. Drat! I clicked on the dots and downloaded and just got sound. I just thought that it would be my luck to have it arrive this week when the temps are beginning to tank for fall! I suspect that where you are it will get year round use if the air is fit to breathe!!! Some of us, pre O2, have been known to throw ourselves down in the snow to kill a hit. Or huff the air from the AC vent in the car. You now have a pool to jump into!! You know, and kill that hit with exercise. So, the question is, can you deduct it as a necessary medical expense??
  12. Bosco, some do benefit highly from exercise during certain times to stop a hit. You might be surprised that the number of CHers' that find pain relief from exercising. And there are those who will get hit immediately if they try to work out. So, it is a toss up. Nice that it worked for you! Ip3, I have not observed this, but perhaps others have experienced it!
  13. I do annual blood work, but I have been on the D3 for many years now. Most likely if you do a repeat at 30 days, the numbers will be pretty steady by then. If you can, check your levels again at 6 months. If not all of them, then at least the D3. I was fortunate to find the correct dose for me pretty quickly. You can pm Batch too!
  14. Crud!!! It works fine here. Try copying and putting it in your address bar to open perhaps? That is annoying.
  15. Hoodoo, I recommend that you stay on the D3 Regimen all year, not just when you want to prevent a cycle. Year round throws up another layer of protection for you and keeps you healthy too. It is a straight win all around, so take it year round. You will be better able to defeat a rogue cycle. Also, if your BP is holding at 140/85, the verap could be upped my your neuro. That could help too. And do get the Short Acting, not the Extended one. It says take 3 times a day. I tailored it to when my hits were coming and that helped a good bit.
  16. We have a member, Moxie, who says 'Life is what happens between Clusters', or it is very similar to that. Many do look at it that way. Also, there is the ancient Story of the old woman who carries her pig with her everyday when she goes to town. This began when the pig was a piglet and weighted less than a pound. Now he is big and strong and weights over a hundred pounds, but still she carries him everyday. The people look at her in amazement and she shrugs it off. It is just something she does daily and that is why she can carry the 100 pound pig. I look at my head that way. Yes, it is a burden, but since I carry it with me daily, I am strong enough to do so. You are too. Take it one day at a time. Soon, you will be dealing with most of what it can throw at you from a position of knowledge, not a blank page that leaves you afraid and lonely. And when you figure out how to deal with your very own beast, you will feel like you can conquer anything.
  17. You could take it out for feeding and lovies to help acclimate it to the new turf! Feed a kitty and they stay for life if you don't mistreat them.
  18. Meet Fuzz. My hubby's rescue cat who is 4 and being moved from the shop to the house. He was abandoned at a month!! Bottle and bathtub raised!
  19. Said barn kitties when I rescued them: Their mom dropped them off!!
  20. What a beauty!!! Green eyes are the best!! Here you go: Two barn kitties wanting in!
  21. Energy drinks or shots are what most people use. I am for coffee as the energy stuff comes right back up for me. I do use V8 Energy during the day a good bit and always have a cup-a-joe at 5pm. Just for my head. Ginger is for shadows. Light hits that are a minimal bother, but still drag you down. Don't know why it works. Don't really care. Just know that it does work very well. And who will give you a hard time for eating it? No one I would not think, so no awkward questions to answer.
  22. Well, the thing that you will find with Clusters, they will morph over time for NO reason. Just when you think you have your triggers and such figured out, it will change. Shrug. So it goes and round and round and repeat. Allergies seem to contribute to CH. So, allergy season is hard. Benadryl at night is a help for many. Hang in there, you will figure it out. Better than the doctors can do it for you. You alone will know what sets your head off. For me, the biggie is low pressure weather fronts. I strongly recommend the D3 regimen to all CHers! Vitamins are great!!
  23. https://photos.google.com/photo/AF1QipPHkv_IAXghvaTQidDlbKfWl24zfo_UOBs3ZMWQ Not sure if this will work yet! It does!! Whee, happy me. Click on the link! This is Dallas Denny singing the Cluster Song at the convention in 2019. The beginning is Hello Clusters my old friend...... Maybe that sounds familiar?
  24. Ganuchi seems to be living the 'good' life!!!
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