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ClusterBusters

21yrs+

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About 21yrs+

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  1. 21yrs+

    Away for year need help on mushroom how to

    Thanks for the post. I don't think our oxygen is up where it needs to be. I am checking on it tomorrow. That is what I thought on the damn shots! I was asleep so didn't know I had started. So should we wait five days till we try the m's & treat with o2 & energy drinks? Yes I will drop the allergy thing. Just trying to understand.
  2. Sorry I've been away for a year but grateful he felt better. So they are back we have mushrooms but I can't remember the cleansing methods before he starts. Kip6 last night short went away with simitriptan (sp) but I thought there was something about not using those or it wouldn't work. We've had A LOT going on recently & were in the ER last night because he couldn't breath. EKG & standard heart test said fine. Came home & he fell asleep & woke up to his first cluster of the season. FYI - he is still having a hard time breathing! We've tried ice heat massage. ??? I don't want a season like last year!!!!!! I'm sure you all feel that way everyday. I want this damn problem to get a cure!!!!! It's worse than cancer! No one quite understands clusters where we live. They say migraines & I correct them every time. We live in a very horrible allergy zone. His clusters seems to be seasonal I think, could it have anything to do with seasons & allergies & if so how do you correct it. I know all cases are different but with ours could allergies have anything to do with his problem. He says no & to drop it. He doesn't even want to talk about it thinking if he does it allows the cycle to happen. Biggest question is mushroom how to & what do I do to convince him to come to the upcoming meeting? He needs to know others completely understand. Any post or help would be again greatly appreciated! Thank you all for being on this site I'm just sorry it was necessary because as a spouse or anyone caring for a cluster sufferer it changes your life & perspective!
  3. sorry for the delay in sending a post. we came home Friday from the hospital. we had two PF days and they were wonderful!!! ;D Sunday night though it came back.... he had 3 ch's first one was only to a 4kip then he took a sumatriptan shot and he was gone in 5 minutes. bad decision!! you guys said something about rebound headaches it came back by 3:30am with it being around a 4 he did the little oxygen we had left only at 4 LPM and it was gone in an hour. next one hit at 7:30am bad one for 11/2hrs hitting a 7kip. only good news is these were all down from a 10kip that he has been getting. he took Relpax around 6:00pm on Sunday night which is suppose to last 12hrs. i guess it did because the bad one wasn't till 7:30am. he is on Verapamil er 120mg per day, Gabapentin 600 - 1200mg per day at bedtime, & Relpax 40mg as needed along with pseudoephedrine for ch. FYI.... just as you said MRI and EKG were both normal. i got a hold of his Primary Care doc and they wrote the order for oxygen at 15LPM with a non re-breather mask. thank you thank you thank you all for helping me with this!!!! i wouldn't have known what to ask for if it wasn't for this message board!!!! to answer your questions....... "tried" D3, kudzu, mushrooms, i just wonder what those trials were like. please don't think I'm criticizing -- everyone here has tried lots of stuff. 1st let me start by saying it's really hard to offend me I'm typical type A personality. also i would never think you guys were asking questions that weren't important to the care of someone with ch. i am amazed with some of the responses and very grateful. next on the - D3 regimen no we didn't do it right i actually mixed it with kudzu thinking if he took all the vitamins maybe together it would work. also we did not do the lemonade like it states. kudzu - I'm pretty sure we did this right but all the info was from 2005 and I'm sure you guys know newer remedies because i couldn't find any new info on kudzu. mushrooms - he only had .5 grams and said it was old. he got desperate and tried before the detox of Sumatriptans. he says he knows he did this wrong. we told his doc everything even the hallucinations. doc said it was like dreaming vividly and he was fine. doc said he has had one other person ask about LSD. my hubby is not willing to do this until next cycle because he says right now he is in too much pain to do the detox. doc also believes he needs a sleep study that they will conduct after the cycle. he said he wouldn't get a good reading during cycle because hubby wouldn't rest. i am curious it it would show how the brain waves work during the actual ch. any thoughts to this and has anyone else had a sleep study? then last night in reading emails we were told the Gabapentin could cause memory loss or problems that you will never get back. then it said weight gain and he was pissed! he also just quit smoking and has been worried about gaining weight. i know this is a small piece but it added to his frustration. his biggest concern is the memory loss. he has a job where memory loss it just not an option. he was so disgusted he was angry frustrated and saying he was pissed the doc did not tell him this and planning a trip to his office to say what the f***! shed some light on long term effects please? now he is episodic and yesterday was exactly 5 weeks. his typical cycle is 4 to 6 weeks. he's now down and depressed again and pissed that he has something that only affects .01% of the population. Personally i think you all should be buying lottery tickets since you are not the norm and maybe this could increase your odds on winning! jeez something good needs to happen from all of this!!!!! again thank you to everyone that read the thread and for helping us try to figure this out! i know my husbands condition isn't as bad as a lot on here but i am so grateful for you guys help. i hope sharing this info will help others too. i have been talking with specialist, nurses, dentist, docs of different kinds and looking for as much info as i can. i will continue to do this for him and for this message board and will post when i know more. please let me know on questions. on another note just to give you a little personal background...... we both work full time have kids and very busy lives. we are fairly young (although recently i feel 10 years older because of this) but maintain very active social and physical lives. we don't want this to interfere with our daily routine but of course it has! there are things we can't change but I'll be damned if i let anything get the best part of us!!!! thanks guys!!!
  4. Night one had a fair night. He smiled & joked with me today for the first time in a month! They have changed all his meds & taken away sleep apnea mask to help sleep. It was delivering 4 of oxygen. He is asleep now & I again am waiting....... No headache today but shadows often. Most of the staff look at me like I'm crazy when I say he's shadowing. He also has floaters & blurred vision. 2 MRI's today & the one with iodine went straight to his pupils & filled. Lucky someone understood this. No results till morning. His heart rate & BP were all over the board. Heart rate was 40 than 60 back to 50 then around 80. They thought something was wrong with the monitor but it was durning an attack. (this was last night) BP went from 138 top number down to 60 or 70 they said this was to low. Also last night. New meds today include saline of course. Verapamil at 160 mg today. BP went back down to 90. Gabapentin 1200 mg but can take up to 1800 mg. An allergy over the counter pill. Valproic acid 1000mg total with D5W at 50 ml total. both these meds were given yesterday & today. When he got his ch last night he took Frova 2.5 mg as abortive with 4liters (think that's hw I write it) of O2. it aborted in 25 minutes & he feel back into a deep sleep. Usually if he does this he gets one again around 9 in the morning. Still nothing. Doc asked for the nasal drops & the hospital doesn't have them. I will be working on that one! Plan for tonight? He's the new test patience so we will see what happens. Old papers say sumavel injection to abort so not sure on that drug. Now on the D3 regimen we tried it but no positive response. Tried the kudzu remedy no positive response. Tried the mushrooms you know the good ones but still not responsive. He said.the only thing that all the vitamins have done is turn his urine purple! Lol!! At least I accomplished something. Oh we got straight ginger from asia & it worked the best but still not one PF day. You asked about quality of life? The last four weeks were dreadful. He feared every night & consistently got worse. I hate these things for him for you guys & all affected. Thank you for the support & responses. I will type more in the morning & let all know how night goes. If we get one night of rest I will be happy but i'm not quitting my research as I know they seem to always come back. the night is over and he had two ch's after bedtime both were around k4 he did oxygen and nothing else. First only lasted 30 minutes 1:05am. he had been asleep about 11/2 hrs. Second one still has it but managable this one started at 3:30 am new meds did not work. he is still in pain cranky and refuses to ask for anything. he is also irritated that I tell the staff when they start and what is happening. he is hallucinating conversations that never happened. i understand this is part of CH but i thought it should be documented so they have all info. am i wrong cause it's really pissing him off? waiting on test results hoping to know something soon. when the doc comes in i will send another message.
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