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Everything posted by Treelove2

  1. Okay I need some opinions, please. The back story........Cluster suffer for 20 years, in the 5 months of my cycle (which normally last only 3 months). Found this wonderful site and started the D3.....been on it for about a month. Also started RC Seeds. Started with 30, just took my 3 dose (Wed.) and went up to 60 seeds but still getting hit every night....however it has drastically reduce the intensity. I would say from a 9 to a 5. I also still get awful shadows during the day and full headache during the day probably 2 times a week but again not as intense. I am so thankful that I can live with this but wondering if I need to keep trying the seeds and increasing or if I should try switching to something else...I was thinking Dalt since that is all I could get my hands on. Those who has tried seeds, did you find it took this many times to break the cycle or did you switch as well? Any thoughts/advice/suggestions/etc. would be appreciated. Thanks
  2. I would love to have this and use it but I have an iPhone so I will be patient and wait but it is awesome that you are doing this!! Thanks!!
  3. Thanks for the Claritin advice. I was wondering about that. I have been using tyneol sinus because the weather here in Dallas has been overcast and that usually triggers headaches for me but it does make me sleepy so I will try the Claritin. By the way....second night with no headaches....still shadows a little but wholly cow I am doing the happy dance!!
  4. I just wanted to take a moment and say a heart felt thank you. Being a cluster suffer for the better part of 20 years, I have tried it all....I thought. Some worked, some did it, I thought I learned how to handle the mental stress on my own but this cycle is different, longer and stronger than ever and I had hit a brick wall. I felt like a drug addict, begging my doctor for steroids and panicking if I was down to 5 pills. So one long dark night a month ago, I stumbled on this site. Everyone here was so kind as I vented my fears and pain but more than that you all gave me what I needed most to keep going.......Hope and empowerment. I have since tried some of the suggestions I got here and although the headaches are not gone yet, I am seeing Results. More important, I know I am not alone and others are trying and sharing and I have options when I thought all was lost. You all have truly brought me back from the dark abyss and giving me the strength to be positive again and to fight again. So for all these reasons and more that words can not describe....THANK YOU!!
  5. Checking back........I have gotten the seeds and tried them not sure if it is the d3 or the seeds that is helping. The first night I took 30 seeds, I got a headache at about 2am but I have to say it was probably only a 4 on the pain meter. I still feel a ton of shadows during the day and one headache at night but it has not gotten more than a 5 so something is helping. I waited 5 days and tried the seeds again, this time bumping up to 45 seeds. (Last night) and Wholly cow no headache last night. I woke up on cloud nine but by around 11am today I got shadows UGH!!! I was going to try one more time in 5 days but go up to maybe 50 or 60 and see if that will do the trick. I usually take them right before bed so happy to say no side effects for me. At least it is giving me hope that something is helping me fight back. Also stated research the dalt but thought I would continue on the seeds while reading more about dalt. Hope my next message is they are gone.
  6. I am sorry I fell off the face of the earth. I have had a brief but beautiful break for about 2 weeks and it was much needed. Thanks for all the encouragement and assistance. I did try the D3 and I think it worked for a little while. I came off the steriods but could not stop cold turkey so had to go done until off. I have been off for 5 days tomorrow and up until 2 days ago was headache free but they came back....UGH!!!! I really don't get it, my normal cycle is 3 months and if I can go a week without a headache they are gone but not this time...which is the scary part to me. I am on month 4 and can't predict them at all this time. But I will say even though they are back the D3 seems to still be helping, I would say the pain is only a 7 instead of a 10 so that is something. I am scared I restarted my cycle though because I was up to 3 headaches a day (which use to be how I could tell they we going to go away) now I am at 1 a day.......dear god don't let this mean a new cycle. Anyway, I ordered some seeds and am going to try that. I have only done oxygen the last 2 days so I should have a clean system to try it. I can't think you enough for talking to me, it really does make a huge difference to know I am not crazy and not the only one. Fingers crossed this works.
  7. Wow I did not really expect anyone to take the time to read my rant. Thanks! I will be happy to answer 20 or 100 questions if it helps. I have tried just about everything. Once had a cocktail of Verpamil, Caphrogot (Which I am sure I spelled wrong), Topomax (Which is terrible), Botox...which worked but only for 3 months then I started the cycle all over again. Tried the SPG Blocker which worked the first time like a charm....downside the cycle came back sooner and now seems to last what seems like forever. I use Imitrex to get rid of the headache, which works like a charm but I am sure it causes rebound headaches but carrying oxygen around to my daughters theater, school, etc is something I try to avoid and the oxygen takes much longer than imitrex. So now I am feeling maybe the blocker did something and this will never go away. I have to say I have a fantastic doctor who says I know more about this then him so he will let me try just about anything. So what works is Predonise. Yes I know .....the side effects.....are killing me. I have gained 20 lbs, my feet are swollen and I am moody and scared to death that I am just killing myself (I read about the damage I could be doing to my body being on it). I am taking 50 mgs a day and have for about 3 months but it is the only way I can get away with only having 2 or 3 headaches a week which in itself is a miracle but I have to say I feel like a drug addict, between what insurance will allow me to have and when my prescription runs low, I run around begging for more steriods and hate myself for taking them. I know I should be happy and grateful that I am getting more relief than many I read about but I can't keep doing this forever. The doctor is going to make me stop at some point or I will not be able to walk because I have gained so much weight and falling asleep on my fat feet. I just read about the D3 Regime and went out last night and bought everything and started it today but I did not see anything about if the steriods will effect taking the vitamins and I am scared to stop them. I even ordered some seeds to try.....never thought I would go that far but I have to be honest I feel like I am losing this battle along with my mind, spirit, and fight. I know we all feel alone with this but during the day I am a business owner and have to act like everything is okay and at night I am a single mom so I have to act like I am in control but deep down I am scared this is my new life since the cycle should be over by now. I joined the facebook but am awaiting approval. In the meantime, does anyone know if I do try the seeds do I need to stop the steriods and the D3? I think I read if I try seeds then no imitrex (which terrifies me, I try not to have a headache in front of my daughter as I know it will scare her so letting go of the imitrex is very scary.) Wow I sound like such a wimp. Anyway, thanks for reading my rant again. Hope I answered the 20 questions and look forward to reading your thoughts
  8. Okay please tell me more about DALT......I can't take this cycle anymore either. Back story...I have had clusters for 20 years or so but I have been lucky the cycle lasts about 3 months and then nothing for about 2 years. The past couple times I have tried Botox....which worked but they don't tell you a side effect is hair loss and when the botox wares off the headaches come back and you start the cycle all over. Next I tried the nerve blocker which worked but again the cycle came back and the blocker did not work, now I am 4 months and no sign of going away.....I read the blocker can cause cycles to last longer so now I am feeling it will never stop. They wont give me predosine anymore and that is the only thing that holds the headaches off. Being a single mom with in a new town and no support, I am scared I can't keep this up any longer. (Sorry it is late and I am venting, scared to go to sleep. So if DALT works I am soooooo ready. Thanks
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