Snowflake
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Posts posted by Snowflake
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20 hours ago, CHfather said:
Cyman, do you have oxygen or some other abortive (a triptan such as Imitrex or Zomig; DMT)?
I found for me, imitrex were causing longer cycles and rebound Ch's really soon after each attack.
Here is SA, they are no longer available as well.
I think 02 is the best way.
For me, Prednisone and loading D3 is helping.
I went 1 week without an attack or shadow. I actually thought my season was over, but the other night I had 8 attacks at night.
I don't know how to tell if the season is over anymore cos I used to count 7 days and if I'm completely pain free after the 7th day, I know it's over. Now I'm not sure anymore.
I don't get day time attacks this season. Not 1. Just gets me at night.
I think the timing of the Prednisone has to be spot on when I take it at 10 am everyday in-between food.
That seems to be helping me this cycle.
I have those rare nights with multiple attacks as mentioned above.
Also noticed that it happens on a full moon always.
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20 hours ago, CyMan said:
Don't feel too lonely i also had a massive attack last night and 2 light attacks. Today felt like I was beat. I tell myself during the attack that this will pass. I keep groaning and trying to remind myself it will pass.
Sorry I can't offer more but I feel your pain
Thanks a lot . I guess we all are here for venting and support since nobody else will know what this life is like outside of this group.
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16 hours ago, karensitas said:
Prednisone can lower potassium, which may cause cramping, but taking high doses of potassium without checking levels first can be risky. It’s a good idea to ask your doctor for a blood test to check your electrolytes.
Ok thank you. Will check my levels.
So far I'm just trying foods high in potassium etc. seems to working .
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On 7/8/2025 at 8:46 PM, BoscoPiko said:
You could try some ice packs for the swelling. The ice might help to numb the pain a bit as well. The PTSD/Anxiety is a beach! I struggle with it all the time even when I'm in the clear. The one thing that I have found that helps is exercise and staying busy. I know some can't exercise without worry of an attack while others will use it as an abort. Ever since I was able to get a break from a particularly looong attack by jumping on the treadmill, it's been something that I do when I have bad shadows. Sorry I've not got much to help on this one. I hope your head clears up soon!!!
Thanks so much.
I go to the beach a lot. Whilst there I never get attacks or shadows the entire time.
I'm always trying to keep myself busy and you are right, it does help so much.
It's just the nights that it gets me.
It's like I am not allowed to rest. Weird.
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On 7/11/2025 at 9:26 PM, xBoss said:
It sounds like you are getting the eye droop? I used to get those once in a while but not too much lately. Do you do stuff like press on your eye or slap you head? I really try to avoid those things. Many CH people have squished their eyes to heck. As for shadows, they def can vary and some are so strong that it's not far off from attack level pain!
Hang in there warrior, I too had a huge set of attacks last night and I am trashed and full of shadows today.I only massage the area whilst taking 02.
It's a hectic feeling. Subconsciously, body is expecting an attack.
Sorry buddy, I hope you are ok today.
Yup my wife said that my eye has almost shut.
But I'm ok today.
I am gone 4 days now without an attack. Counting till at least 7 days so I know this nightmare is over once again. I really hope so then I can resume normal life once again. Can't wait for this season to be over.
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I had quite a brutal attack at midnight.
This morning my eye was swollen and side of my head as well.
Busting pain on the affected side since I woke up.
I couldn't tell if is a hectic shadow or aftermath of the attack.
I tried O2 for a while but didn't settle this pain and discomfort.
Still have it at the moment.
Pain med not helping. Anti-inflammatory as well.
The anxiety is overwhelming since subconsciously my body is expecting a CH
What do you guys suggest in this situation?
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On 7/3/2025 at 5:19 PM, CHfather said:
I have been very, very surprised that a product called Theraworx actually seems to help to quickly relieve my intense leg cramps. It's not preventive -- it's a cream or roll-on that you apply when the cramp begins (though sometimes I use it when I'm getting into bed at night as a possible preventive). It's just magnesium. Since it's topical and not consumed, maybe it wouldn't affect you as you have described. Amazon.com: Theraworx Relief for Muscle Cramps Foam Fast-Acting Muscle Spasm, Leg Soreness with Magnesium Sulfate - 7.1 oz - 1 Count : Health & Household
I also concur with Jeebs that if you can find a form of magnesium pill that doesn't have negative effects, it would be good. I would say that oral magnesium has helped me more than potassium.
I bought a vitamin called Plenish k sr.
Didn't use it as yet since I read that it has alcohol as one of the ingredients. So I'm not sure if that would be a trigger since alcohol in general is like a death sentence for me.
It came highly recommended to boost potassium levels since I am convinced that my potassium is really low hence the cramps.
I am scared to try it though, part of me is saying just wing it for a few days and see how it goes. Lol
2 hours ago, sanderson said:I would strongly encourage you to discuss these leg cramps with your doctor. It certainly could be from the prednisone, but there are some serious side effects of prednisone that can cause pain in the legs, like blood clots. i don't say this to alarm you, but if simple measures aren't releaving the cramps, please call your doctor. Prednisone can work wonders sometimes, but it is important to be aware of uncommon serious side effect potential. I had a blood clot in my arm when i was on prednisone, fortunately it was in a surface vein so it didn't turn out to be serious. But it felt like a tight muscle for a couple days before i realized something else was going on.
Let us know how you are doing, we care!
I seriously didn't know about the blood clots. Thanks for letting me know. I only knew that it cause avascular necrosis cos it's what caused me to have my hips replaced at age 30.
I know that Prednisone whilst helps a lot for a lot of conditions such as wheezing, skin issues etc, has a whole host of side effects that doctors don't tell you. Yet is is the most cheapest drug on the market.
After I stopped the Prednisone going on 3 days now, I didn't have the cramps for the last 2 nights.
However I have pain in the areas where I was getting the cramps still.
The beast is still around but had no choice since it's hard to juggle with cramps whilst having an attack and taking O2.
I did try orange juice to pick up my potassium and it did work.
So Prednisone also depletes ones potassium.
Thank you for the info. Much appreciated
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Good day guys,
I hope all are managing.
I have been taking 50mg of Prednisone daily for the past few weeks, in an attempt to assist with the loading dosages of my D3.
It is helping, however I am having excruciating leg cramps mainly at night. Now it is also cramping on the muscle surrounding both my hip replacements. Get them some times when I'm driving also
So, I do know that Prednisone actually depletes Potassium levels.
Magnesium, for some reason, is just makes the cramps worse.
I tried other anti cramp meds out there and its not working.
Just wanted to find out if it is safe to take high dosages of Potassium for now and if it will aggravate the Clusters or will it be safe.
Thanks
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10 hours ago, Craigo said:
Sleeps an interesting thing! Sorry if it was mentioned but how are you measuring, a smart watch or such? Good on you for tracking, super cool what tech can do.
This article was published, I’ve only glimpsed the review but based on above you may find it interesting. Not a specific CH sleep study but CH is reviewed in the context of arousal & CGRP. It also looks at microbiome research and sleep.
I had this set aside for this weekend to read, will come back and share further thoughts once I’ve digested it.
Orofacial pain/headache interlaced to insomnia, sleep apnea and periodic limb movement during sleep/restless leg syndrome: a critical and comprehensive review with insights into social determinants
https://files.jofph.com/files/article/20250612-403/pdf/OFPH20241219001.pdf
Thanks for sharing friend.
Will have a read.
I'm using a smart watch in conjunction with the health app on my phone.
I must say that it measures almost everything like sleep patterns, sp02, breathing, heart rate. All to the "T"
I had many of these things in the past, however the one I'm using now works excellent.
It would be nice if everyone could invest in one as it will give us all a sense of tracking this beast.
I know some are expensive and some of us can't afford it. I got one couldn't, however I saved to get this particular one and it's totally awesome.
It is an Huawei GT2 watch and I'm using a 2014 model Huawei Mate 20 Pro with its OEM health app.
Goodluck buddy.
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Was at the beach fishing on 2 occasions in the last 2 weeks.
Whilst there, and even though it was a "Full Strawberry Moon" , I never had any shadows, or even attacks during the 7 hours I was there each time.
Strange enough, when I got home, I suffered 7 attacks in a space of 1 and a half hours which I kept aborting.
Basically 15 mins apart on both occasions.
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6 hours ago, Alx said:
It is almost spooky. I had the same attack sequence in the nights.
I am also getting a sleep tracker. Very interestingYeah it is right?
The one I'm using is an Huawei smart watch G2 paired with my old Huawei health app on the Mate 20 Pro Series.
Seems to be doing the job.
It's amazing that the very 1st REM onset triggers my attack which is usually 1 hour after falling asleep. Yet the following REM spikes doesn't.
I'm just trying to get some more research done regarding the sleep aspect as well as why my subconscious stress at midnight is skyrocketing.
Try it out brother. Let me know on your findings.
Good luck
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Hi all,
I know you probably all know this already, however, aside from these attacks getting me during the onset of REM, I am just curious about the spike in stress levels especially at 12 am. Seems weird.
These were the last 2 nights stats.
Also whilst melatonin is mentioned to control you from going into REM, there's mixed signals about it from what I have read. It can also send you into the "devils playground".
Just fascinating looking at this. My awake times are when I am having the attack.
Will continue to monitor.
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On 5/31/2025 at 11:18 AM, snafu said:
hey man, that's some rough stuff you have gone through in your life. you still came out on the other end so you know you're strong as hell, so don't give up hope for the better future.
as others have suggested i would go to a psychiatrist and get checked out/tested, just to make sure. meanwhile i strongly suggest you don't touch any psychedelics, they could make things a lot worse.wishing you all the best and stay strong!
Thank you so much.
It's funny how all this stuff surfaces after I reached 40. All along I had it buried along with a blood stained Tshirt from all the abuse.
I still faced my abusers as they came for my brothers funeral.
Makes me angry cos here I am battling to rake up money for oxygen to survive and they are actually millionaires. Living the life. Have a family with kids etc. And we can't have kids and concluded recently that we dont want any.
My wife also has alot of complications with her health. Yes she still goes to work.
I on the other hand had been medically boarded from work and I didn't want to be. They put it down to the fact that the company will not alot me to carry an oxygen tank to the work premises and since I walk with a cane, they used all this against me and "worked me out".
That's South Africa for you!
Never looked back cos I had to be the man of the house straight out of school.
Did manage to save, study and achieve some of my goals however I was limited.
On Xmas Eve 2001, I was on my way to work in a taxi which list it's back wheel doing 160kmph and it rolled over 3 times. Landed on its roof.
I got out without a scratch. Helped whoever I could.
That was also a weird thing that happened.
I started seeing a psychiatrist and psychologist. I explained what Ch is all about and that I cannot take just any meds they prescribe cos I'm on the D3 Regimen.
So will see how it goes as time goes by.
One thing I noticed, when I'm busy, either fixing my car or fishing, I don't get attacks.
The moment I lay on the couch watching TV, it gets me.
So I have to be busy as best as my physical conditions allow me to be everyday.
I have alot of demons. I hope I get to tackle them all and I will not let my entire situation ever stop me from doing things that normal people do.
Made it this far, will never give up now.
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7 hours ago, xBoss said:
Are you in your late 20's? That is usually when stuff like schizophrenia starts to show up.
I'm 45 years old. I was sexually abused between the ages of 10 and 14. Also physically bullied and beaten at school during my younger years. Ch started at 16. Had both hips replaced age 30 and 32. Due for intervention.
We had 2 miscarriages upon the time I was going through hip surgery.
Had ganglion block done 2019.
Lost my brother in 2023 through cancer. Age 41.
And I'm sitting here wondering if there is a spot to go fishing where my car is visible to get to the tank should I have to.
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Is there anyone in here that has this condition?
I can't help it but feel like sometimes, well more so recently that I am not in the drivers seat anymore.
I am behaving strangely. I have moments like this where I can feel myself.
It feels like I'm hiding and typing this. But also that I'm being watched.
People and everyone in my circle are noticing strange differences in my personality alot recently.
I'm concerned.
Feels like something else is saying and doing things I don't mean and the worst part is that I cannot stop this from happening.
I'm scared.
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Good day,
I hope you all are doing great.
One of my many hobbies are surf fishing.
However, and considering my ceramic hips, I haven't been fishing in years.
I would love to go back to it, however I was at the beach up the south coast a few weeks ago.
Spent about a full day there, and I noticed that a cycle began a day afterwards.
So not sure if that does have something to do with being at the beach. Was a full moon as well towards that evening.
I love fishing alot.
I do know the lunar activity does obviously have an impact on the ocean and tides. Basically anywhere there is water.... Including I side our heads.
Anyone think that this would spark a season or not or interfere with my D3 Regimen?
I remember reading years ago about the moon, ocean and how it could start a cycle but nothing was really concrete. Just want to make sure and don't want to deprive myself of my hobby. I find it relaxing otherwise and atleast I can get out the house for change despite all the horrible challenges I have endured over the years.
Thanks for all the advice in advance
Snowflake
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On 4/6/2025 at 7:10 AM, cluster-schmuck77 said:
Hey everyone. Been awhile since i’ve been on here. I hope everyone is well and in good health.
The last time i was on here, I made some pretty anxious and depression-ridden topics about how i thought my life was over.. boy was i wrong. I’m posting this to further support the tools and methods that have been written about on these forums.. and to possibly give hope to those that feel lost, as I once did.
The last 4 years have been some of the most eye-opening years of my life. I’ve made drastic health conscious decisions that aided in my relatively pain-free years. I’ve tried “busting” and diet changes. Both with great success. I listened to my body and found that a combination of Vitamin D3, magnesium glycinate and omega 3 supplements help keep my headaches at low pain levels or at bay. An (almost) gluten free, no msg or additive, low histamine, anti-inflammatory diet helps maintain that low inflammation in my body. Sleeping with my head slightly elevated and neck supported also helps me keep the blood pressure from building.
I also found that getting sick with a cold/flu will immediately bring a cycle on. I assume because of the sudden onset of inflammation in the body. Especially in the face/sinuses. Taking valuable information given by Pete Batcheller, (don’t know his @ at the moment, sorry!) the cycles have been very minimal in times where they should have been grave and unforgiving.
I’ve learned to accept the fact that I may have clusters for the rest of my life. I’m 24 years old, and for the first time in the 16 years i’ve had clusters, I’m finally OK with it. Where there’s a will, there’s a way. But it’s important to keep in mind that pain free responses will not happen over night. Not every piece of information helped me. Some worked, some didn’t. Having a strong support system of people helped immensely. I can partially attribute my positive attitude to one of the “busting” methods that we know about. These headaches made me appreciate the little things in life, which in turn, makes life much more beautiful. Music sounds heavenly, sights are awe inspiring, love for those around me increase. I can live my life knowing I have the tools and resources to stop a cycle, should it come back.
I also learned that hardships and trying times await each and every one of us, but will never make life not worth living to the absolute best of our abilities. The human spirit is truly indomitable.
I extend my love and thoughts to everyone here! I’ll be sure to keep everyone updated as I grow older
Hi,
This is great news. I am so happy for you. I also went through the phase of hopelessness quite to the extreme. However, I found the answers within this wonderful group of souls and I so far have had 6 wonderful pain free years away from this curse.
The only adjustment I made to my lifestyle aside from starting the D3 Regimen 6 years ago, was just stopping alcohol completely. I mean I was a social drinker but just stopped it. Now I can't even stand the thought of it.
I still smoke since 1995. I haven't made any changes to my diet much, beside eating alot of apples and drinking alot of water.
O2 has my back always just incase. So that is a must have readily available always.
So goodluck going forward and keep to what works for you.
Pain free wishes
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Hi
The injections have been discontinued in South Africa for some time now. I'm in Durban.
However, what I found personally is that those injections, whilst it does abort the attack, it brings on a series of follow up attacks.
I would suggest that you read through the vitamin D3 Regimen.
Since I had been introduced to this magical treatment by fellow sufferers, it has really working so well for me. It does take some time to start working, however, once you are a month or so in it, it works wonders at giving you years of remission. Well that's what I found. You just have to be patient with beginning and once you in the game, you will be rewarded greatly.
It is easy to lose hope whilst beginning. I did. But I gave it my all and I am pain free going on 6 years now.
Whilst doing this regimen you will still get attacks at first, however, kill those attacks with O2 and maybe some OTC pain meds for the after pain on that side.
Look for the D3 Regimen on this site. You won't go wrong.
During these past 6 years, yes "he" did appear once, however I was guided to increase the D3 dosage for a few weeks and it phased off. Always keep O2 on hand. Always.
Make sure to check your D3 levels regularly.
When I started, mine was sitting at 18. Explained my brutal attacks and frequent cycles.
I managed to bring it up over 80 with loading doses of D3 along with the rest of the vitamins within a matter of 6 weeks. I am so glad this is working so well for me.
Maybe consider or read up on it.
Well wishes.
Snowflake
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Welcome Eric.
You are in the right place.
Wishing you a well informed read/research and I hope you find a path of management that suits you well to keep the Beast in its cage.
Goodluck
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Hi Friends.
I hope you all are managing and coping well.
Just a quick one, I wanted to add Glutathione, with the D3 Regimen to help/aid with the repair of the muscle surrounding both my hip replacements since I'm due for my second set of hip replacement surgery cos it's been over 15 years now. I'm 45 at the moment, so if I need to have them done again, now is the right time. Dont want to reach my 70s and then it will be too risky.
However, if I can use alternatives like Glutathione to repair the muscles mainly cos my current ceramic joints are still in tact and functioning properly. Well... My left one is squeaking if I squat ( was thinking of using WD40.... Lol kidding) , but he ortho took x-rays and Said that it still looks in good shape. I do experience pain from time to time and I walk with a cane to assist me.
Is this ok to Take glutathione or will it interfere with the Ch and the regimen?
Thanks and well wishes always.
Snowflake
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5 hours ago, BoscoPiko said:
Well there's no denying that you went through some terrible experiences and my heart hurts for you for that. While you can't change your past, you can create your future. With everything you've endured, I would imagine that you are incredibly strong (you are a cluster head afterall)! Keep your chin up and continue putting one foot in front of the other. Our past plays a huge role in who we are today. If you were stripped of your past you wouldent be YOU (not saying that you should have went through what you did) just that your stronger then most will ever understand because of it. Keep being STRONG... You got this!
Thanks alot friend. Means alot to me. Seriously does. Wishing you a lovely day.
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On 3/23/2024 at 2:06 AM, Chris Moore said:
I know how easy it is to be so mad at this condition and the number it does to us. I find that for me, practicing being as kind and compassionate to myself and then to my loved ones really does help. Staying as calm and peaceful as I can (both while having an attack and during pain free time) helps to lessen pain and attacks overall.
I know it is SO MUCH easier said than done. But just try and practice compassion in every way you can, starting toward yourself and it helps.
Sometimes what I do to facilitate this is I imagine myself as a 16 year old kid getting these attacks for the first time. I think about how scared he was and how alone he felt and how much pain he was in. I feel so, so sad for him and just want to hug him and tell him everything will be ok and comfort him the best I can. Then I take all of those feelings I’m experiencing toward the young version of me and extend them toward present day version of me. Compassion and care and empathy toward myself. For me it helps to calm me down and lessen overall pain and suffering.
Hi there Chris. Thank you so much for taking the time to inspire me in ways to handle my situation. I truly appreciate it very much.
I assume this is a safe place to spill my guts without being judged?
Here we go:
Just like you, my battle started when I was 16. But let's rewind a tad.
Between the ages of 10 till I was 14, I had been sexually and violently abused by 3 people. Continously during this patch off my life, holidays, birthdays or any special occasions were taken away from me cos this when it was at its worse. These people are not my immediate family. Anyways, I hid this from everyone up till today as I'm sitting at 45 years old. When I was 19 I couldn't study cos we couldn't afford it. My dad was ill and my mom worked 2 jobs. So I went straight into the job life so to speak, making whatever money I could so we could put food on the table. Age 22 I managed to save up enough to study and achieve a diploma. Things started looking good for change. 2001. New years eve, I was on my way to work. Didn't have ea car as yet so I took a taxi. The taxi back wheel got loose at 140kmph and the entire vehicle rolled over about 3 or 4 times before landing on its roof. I managed to kick out the back glass and climbed out. Helped who ever I could. Cellphones where flung out of the taxi however I managed to find mine to call for help. But just felt so dizzy that I fell onto the road. I could hear something screaching only to find a truck tyre inches from my head. The drive jumped out and rush to me. My shirt was soaked with blood etc. So he just ripped it open to check for injuries. I still can believe that I never had a scratch. It was somebody else's blood. 2011. My 1st hip replacement. 2013. My second hip replacement while my wife was in the same hospital sorting out our second miscarriage. And I know what going through a miscarriage is being a male in a marriage. I have seen also what it does to the female. It's torturous. There aren't words actually and I tried to support from I was. We currently do not have kids and we don't want any. We just have a dog which we latch on to. And I can see that I (as much as I love my dog) am second to him. Which kinda sucks in a way.
Moving on, I had been medically boarded from work due to the headaches and hip replacements even though I loved my job. They put it down to me in a very sly way using the fact that they refused to let me carry my O2 to work. I fought them since they 1st brought it up in 2014. But they got me out on 31.03.2021. So yeah my salary took a plunge and I'm left at home staring at the walls. I turned my hobby into a small business which is electronic repairs, however I stopped for a while now since my brother passed last year.
Still dealing with my loss. I always wished it was me and still do. To be honest, I'm not sure if others feel this way, but I am not afraid of dying. Actually alot of people are not afraid either. I guess they fear of how they will die. I so welcome it. In fact I had 2 failed attempts at suicide. Yes I'm seeing a psychologist and psychiatrist which I also put on hold since last year.
... And now the CH season starts.
I am sorry for the long read and if I said or mentioned anything that is not allowed on here. I am glad I did find this group because I did learn alot, especially the D3 Regamin and O2 treatment. Even though the damaged to my self has already been done. I may require bilateral knee replacements soon as well as the 15 year intervention regarding my hips.
I am sure others have been through worse in their own way and path of life and this is not to undermind what you all are going through as well.
Just know that I appreciate you all for the advice and direction in managing this condition atleast, even though I have no control over my past.
I guess all that's left to say is Thank you all from the bottom of my heart and pain free wishes always.-
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Wouldn't it be nice if there was a simple book of what this condition does to a person for the sake of understanding to everyone else. I know you probably have the beach boys playing in your head right now and I'm not talking about the pain of our condition. 90% of people will never go into this site to understand cos let's face it, they don't care enough to do so. I'm referring to the state of mind in all it's "splender". Anyone else has no filter during CH seasons? I feel like Eminem on steroids and I'm pissing off everyone around me. Obviously I don't care either right now however, people are noticing change in my responses and actions. So I shut up most of the time or try to avoid contact with anyone. Even my spouse. She does know the "drill" however the questions. The simplist of questions can start a fire in my eyes and what comes out the mouth, are stuff that neither of us expects. As for being out on the roads..!! It's like I have a license to be an ass.
My D3 update: Sitting at 259. Hits max 3 per day @ 5 to 7 mins aborted with O2. No nocturnal attacks.
Shadow or Pain?
in General Board
Posted
That is really ridiculous.
I thought south Africa was bad.
Sorry buddy. I hope they change their ruling. The issue is that there is no one that has heard of chs. Every person I have ever mentioned it to, has never heard of it.