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Everything posted by Suzz61

  1. Its great if it works for you, but doesnt for everyone.
  2. thank you for the info. Its hard to know what is really working or not, as she just changed a bunch of stuff,,,,,time will tell I guess........thinking you are right CHfather, I would prefer to drink smaller drink and bonus if its stronger. They didn't do block today, want to wait til off prednisone in another 6 days, and if the same happened last time where CH increase, then he will do the block, think he called it right 3rd occipital nerve block. Then he would know how effective it is, instead of doing it while on the prednisone. Makes sense I guess.
  3. oh and that is what it did,,,,,,,totally out of control,,,,,,,,starting getting CH daytime, night time whenever it decided to strike !!!! I go for nerve block tomorrow, so hopefully that helps in the long term and now have O2 so hopefully Im covered. She gave it to me hoping to break the pattern, so guess we will find out, this time for 10 days last time was for 7 days,. O2 can you take kind of as preventative? or only when you get CH???
  4. interesting, cause you can just about time them!!!,,,,,Go to sleep and wake up within the hour,,,,,,,and every 2 hours from there........It was been awesome to just get some sleep, I am starting to feel somewhat human again, but still very tired but no pain so far today, so that is a bonus!! Fingers crossed....I might try that Fusion Energy drink, I have been doing red bull and bought a 5 hour energy drink which is in my purse, but haven't had to take it yet......
  5. Botox works for migraines some of the time, but will do nothing for CH,,,,,,,you get it in the forehead, a little higher in the head, by the ears, side of head back of head and places in the neck...I tried acupuncture, chiro, even went to the dentist to see if something wrong with teeth.....I am looking at a lot of these drugs, and I have been on LOTS of them to no avail. Right now prednisone again, for 10 days,,,,,,,yesterday was day one,,,,,,,,,and I actually slept all night and NO CH all day and all night, that is a first in months except when I was in Las Vegas.......Tomorrow I am off for the Nerve block, then Monday for MRI,,,,,and hopefully will still be pain free....A lot of these drugs are scary, my doctor was going to put me on Lithum, but she would have to monitor my liver, kidneys and something else, and I saw a post in here where someone was taking something for sleep, sera something,, and metropol for blood pressure and she was PF,,,so told my doctor about it, and she changed my prescription to that instead of Lithium and yesterday was my first day PF,,,,,,not sure if coincidence or not, but fingers crossed, will let you know
  6. Thank you CHfather and Tony.........ok, I know what you are saying, and I would rather take pills then go thru head pain!!!,,,,,I think I need to make my own thread, cause I have stuff posted on different topics, but hard to go back and remember where I posted and if there is an answer with something else to think about. I have had a few interesting last 3 days!!!,,,,,Since seeing my Dr.,,,,,and started the oxygen, I have had 2 CH attacks, have used the O2 and used Imitrex once. Had mild ones that I could, drink and rub away. First night, I slept all night with no wake up attacks,,,,,,,,second night, had one before bed, then one after I was sleeping a short time, that one I used Imitrex,,,,,then continued to sleep the rest of the night with nothing more,,,,,,,,,,then last night,,I went out and had 2 drinks, thinking I get them anyways, cant hurt, got home,,,went to bed,,,,,,,slept,,,,,,slept,,,,,,,and slept,,,,,,,I never got ONE yesterday!!! Woohoo,,,,,,,Last time that happened I was in LasVegas back in November.....I was getting 5 to 8 attacks a day,,,,and steady for a while now......so NICE BREAK....I will go and print off the D3 vitamin sheet and seriously think about taking them. My MRI is booked for Monday,,,,,interesting she is checking out the pituitary gland this time. See what happens
  7. I wondered about the Topiramate and the block busting, so that means I need to get off of it too? I saw the D3 regimen, I HATE taking pills and gag most of the time trying to get pills down and does seem like a lot of pills, might sound stupid, but I would probably go with MM before the pills. My Dr. just put me back on the predizone for 10 days to also help get this under control, it did help last time but I am just starting this and now got call from Dr. office so now, I have another question, I just got a call this morning from Dr. that they want to do the nerve block this Saturday, I know she had contacted Dr. to do it, and got papers it would be in May, but now she has said its urgent and he is going in on Saturday to give me this nerve block, I am kind of scared about this one, any thoughts on this????
  8. Thanks Bejeeber!!! My Dr. Dr. Bestard in Red Deer, AB, will be here checking out this site, I told her there is a wealth of information here, and some awesome knowledgeable people!!! CHfather, the original mask, they gave me had a bag attached, the second one he brought me to the house did NOT have a bag, So the one I ended up with didn't have the mask wasn't the right one, because he said it didn't have the right regulator on the tank for the other mask. So the medication I am on right now is topiramate 100 mg once a day at bedtime ( I take it in the morning, I was paranoid it was giving me CH) cause was like I always got them after taking the pills lol....and the imitrex which I haven't taken now since Monday night at 7pm,,since I started drinking energy drinks in the evening haha and I do take synthyroid .75 mg. I am hoping I don't have to take oxygen tank out of house, I am waiting to see what this oxygen does if it lessens the frequency and severity of attacks. Tank does have a stand for portability which is nice but still prefer to keep it at home.
  9. I must say I did learn something yesterday, first I am happy to say, I GOT MY OXYGEN!!! woohoo!!!,,,,,,,I got 100%,,,, 12 L,,,,,,,,and started out with Non rebreather mask, until they delivered to my door..........First they were going to have me take everything home for the advanced air place, but I didn't feel comfortable having oxygen in my car, so they said they would deliverer. They went over everything with me at the office, put mask on for 2 seconds, I noticed it had a bag on it, but basically got the mask part to fix, so had it on for 10 seconds with the oxygen going., bag wasn't opening which I never thought anything of. So he delivers to my door with a different mask telling me that the regulator on this tank (and the tank I have is the biggest one, should last a week at least if using twice a day at 15 minute intervals)., is not the right one for that much flow of oxygen as I would get too much CO2 so gave me different mask and said they would order right regulator. Interesting how they were going to send me home with it,,,,,til I said I didn't feel comfortable taking it home!!...So please make sure you have correct regulator on your tank as well, not sure if these guys are stupid or what. First experience with Oxygen it was 12:30 last when it hit,,,,,,so thought well, might as well try the oxygen, and if I wake up in the middle of the night I would do the Imitrex, did oxygen for 15 minutes, still feeling some pain, turned it off, sat on my bed, rubbing my temple some and finally just lied down and figured if I had to I would get up and do injection in middle of night if I woke up, cause don't want to fool around with o2 in middle of night half asleep, but I didn't, I SLEPT all night, first time in forever, was so awesome!!!! I have the BEST DR. She watched the National Geographic you tube with me, about CH and mushrooms, I showed her this site, told her info from this site, and she will do whatever we need to get me CH free. Got me the O2 in one days, and exactly the strength, everything, like I said she is awesome!!!
  10. CHfather - she did have me on verapamil but that was the one she took me off of.........and I was o a steroid for a short time, and I do have to say, with that I did go a day or two with NO cluster headaches, but I don't remember last time I haven't had one, I guess that would be when I was in Las Vegas, that is why I do think oxygen does work, but I know when I got at hospital last time, it was still only short lasting. Then I was being treated for Migraine, but those medications didn't seem to work, and what was intereting, I couldn't figure out, how people with migraines, could lie down in their bed for days at a time, and I couldn't not lie down, the was the light bulb moment, when she looked at me and said, WHY, I said because the pain is so much worse, I get agitated, want to rock, cry, just about scream, whatever it takes to get me thru, sad really.... She grabbed her book, and I have not one or two symptoms of CH, I have them all, which blew her away. So here we are, I never heard much about it from anyone, heard about migraines they are bad enough, so did more digging and that's how I found you wonderful people, nice to know I am not alone! Sometimes wish I was so nobody else had to suffer!
  11. Thanks so much you guys, this has been the most painful experience in my life, this last week the worst. It is like I am forever taking Imitrex and it is NOT lasting very long, I am not getting any sleep, I lay my head down for any length of time and it starts all over again, driving me crazy, so I have to sit up, rub right side of my temple and right above my eyebrow, pressing in as hard as I can to try and stop the pain, sometimes it works but most time it doesn't. I have a pretty high pain tolerance but this takes the cake. I read somewhere on here someone calling it the BEAST, last night was the first time that I actually got that, it was like the BEAST was back again for about the 8th time that day/night, hence no sleep and I am at work today, have been fighting it all day, finally had to go take an injection or I wouldn't be here typing this nor at work. What the doctor has me on right now is the Imitrex and TOPIRAMATE AND VALPROCIC ACID, she did have me on that other one but there is something with my heart I guess that she took me off it, so I wasn't on it for long. My Dr. is now thinking I am doing too much Imitrex which I think I am too, but I don't have a choice at the moment, cause I cant handle the pain, and I am waiting to get into see her so I can get the oxygen, and I am bring all this stuff from this site about oxygen and mushrooms so she can see this stuff as well as will get her to watch that video about mushrooms and cluster headaches then see what she has to say. But you know drug companys, they like to promote drugs, they make big bucks. Any way, has anyone ever gone to those Oxy bars> I was going to go to one tonight, just to see if it does anything in the meantime otherwise only way to get oxygen is go to hospital which will be 6 to 10 hour ordeal.
  12. Well thank you Tony, I will have to get another appointment to see my Doctor and get with the program. The sooner I can be rid of these headaches the happier I will be. I am so happy I came upon this sight today. My son showed me a video a few months back about mushrooms for cluster headaches but I kind of dismissed it but last little while I have been checking things out some more and trying to find out as much as I can. This site has been very helpful and I will be back. I am on 2 preventatives, not sure of of the names off the top of my head right now, but I have seen the list of them and have been on most of them to no avail. I'm not much of a pill popper either so not easy taking pills either. One thing I thought was really weird, I went to Las Vegas in November and I brought 2 injections for everyday I was there, knowing I would be staying up late, drinking and carrying on, but you know something, I never got ONE CH, not one hangover, NOTHING. that blew my mind, I was back a day, and they started again. They say they pipe in oxygen there, maybe they do!!!
  13. You are correct, that is the injectable I am on. I am starting to think I am getting rebound headaches with this but it does take the pain away, but I keep getting them back and back again. Ohhh that is scary to think I have to be off medication for 5 days before I can even try any busting. I don't remember the last day I didn't have a CH, I have been getting 2 to 5 a day and the worst pain, so to think of not being able to take anything, not sure I could do it, scary thought!!! My doctor has talked to me about oxygen but hasn't done anything about it as of yet, she is a neurologist and I have been seeing her for past 2 years prior to that was just GP thinking I was getting migraines, prior to that they thought I had hemi carnia continua now diagnosed with cluster headaches and I fit all the criteria for them. I have had ct scans MRI and of course nothing shows. Waiting now for another MRI for pituitary gland see if anything shows up there. I was thinking I could just do some shrooms and be fixed sighhhh... I just wish they knew what caused them so they could fix the problem, I don't like taking all these drugs, right now I have a drug plan and yesterday I go not even a months supply of injections and it was 1928. thank god for a drug plan!!! There has to be something else but these drug companies are making millions. I am living in Canada so I guess I need to sit back and read some more and know it wont be happening so fast
  14. Thank you Tucker, good articule. Not sure it will be very easy to find spores around here, so it will be finding someone who has mushrooms to sell for now and were talking the street kind. I am desperate to try anything. Does one have to do this once a week for a bit or every couple of days, or just once or play it by ear? Any ideas on that
  15. Does anyone know the dosage of mushrooms that one needs to take to try and get rid of these cluster headaches, I am at wits end and will try anything at this point. I have been suffering for 3 years now first was being treated for migraines but couldn't understand how you hear people in bed for days when I cant even lie down. I am now on the injectable which has been a life saver and has probably saved me taking my life, but when you see people can actually get rid of them all together, that's what I WANT. I get them every day and have for 3 years, I might go a day or 2 without, but that is it, I am on preventatives but they don't seem to work I sometimes think they give them to me lol. If anyone knows the dosage please respond. Thank you
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