BoscoPiko

So I'm sure this is going to be all over the place but I'm going to try and do my best to stay focused here.. I call what I feel when I am having a CH "spikes" because they feel like someone is spiking me with something in my rt. temple with something. August has always, (since I have been diagnosed, and tracking) been a doozy for me. This time around is different. Normally, a single spike here and there would indicate that a full blown banger was coming soon usually within a week or two. I started the D3 reg of which I am sure I managed to F up even though I taped the destructions to the fridge... Something must have been working as I just kept getting spikes most days just one or two and the intensity level was minor in comparison to what I am used to (not sure you ever really get used to it). Anyhow, my questions that I am hopeful someone will answer are … (Also I am grateful to just be having rando spikes so don't get me wrong please). 1. Do any of you get random spikes/shocks/you know picks to the noggin? 2. If you only get one in the day do you go on about the day like you don't need to be careful that something you do will bring one on? Like do you still workout? Go do something that makes your blood pump? 3. Is it normal to have just a random spike here and there nearly every day for over a month an a half? (Tell me I am still episodic)? 4. Does anyone use oxygen as a preventative verses an abortive? 5. I have been getting random minor spikes in the left temple, is it common to switch hell sides and could this indicate that I could be switching sides? I know this is a big ask I'm just a bit overwhelmed with this because I feel like if I'm not having a headache (hate calling it that) that I worrying about when I will. On the upside I did get my blood test (home test kit) mailed back in today so at least I'll know how much I messed up the loading. Seems cut and dry but leave me .... Any way I would really like to see what you folks have to say. Major thanks and may your brain stay off the fritz!

Wow. Cool who knew .. Thank you for the response to y mini melt. I love her! Although I am a Golden girls fan when I am in cycle (don't ask me why) ..?? Anyhow. I'm not brave enough to be a buster yet and am trying different ways of manhandling my mask.. Thank you for taking the time to poop.. lol joking pop on here and respond to me:)

Well, I suppose there will be no removing the Hypo then… Joking… And yes, I did find a new Doc after she asked me if I could tell the difference between the types of headaches I was having (I’ve only ever described one). I do have a decent Neuro now, but I sure do wish I could find one that actually suffered from CH themselves… That I think would really be something…

I keep trying to reply to this and I'm getting an error msg.

Thanks for the info! No labs as of yet. I ordered a home finger prick test kit that was suggested to me by the D3 hero on here because my handy dandy insurance provider wants me to go through a bunch of Covid hoops to enter the lab and I'm just not down for that junk. I should have the kit sometime next week then be able to mail it and get the results in another week or so. Thanks for the response to my scattered rant and 7lbs ouch!

I suppose I'm just confused, but I assume like many others that are experiencing pain of this magnitude, you research and try to learn as much as you can? One thing I keep coming across is biological clock. I get that sleep is a factor and I cant sleep when my brain is on the fritz but I always thought I slept ok prior? My husband did tell me I had a bad habit of cursing in my sleep which I thought to be a bit funny but what do they really mean? I'm lost on the biological? He also said I am a teeth grinder. No I don't have a tooth ache. I remember the day this came on and I was just sitting there minding my own, got up to let the dog in and said F! what was that! I thought I had a brain freeze without Ice then one by one they pilled on in consecutive order and started to kill my brain. Bottles of NISADS started to pile up as did the desperate calls to the my health care provider. They told me I had migraine and to go lay down in a dark room with a cold towel? What? I don't think you understood? This just jumped my brain? Attacked me from the inside out? No dark room, no cold towel no way can I lay down? Did you hear me? My head is trying to kill me with an ice pick every three seconds? You get that? Quickly I started to hate her as she started me on a propanol and gave me a script for 25mg of some triptan. None of this helped. I later learned that she gave me a triptan dosage of what would have been given to an infant with migraine.?? Then one day she asked me if I could the difference between my headaches? I hung up. Had no clue what I was going to do... Just knew she wasn't going to help me.. I don't know why I'm writing this I really don't.. I suppose I just am .. I'm not brave enough to bust.. But I have a mouth on me sorry! I keep thinking I'm out of this cycle and then spike to the brain and I get mad! But its really been better since the D3 REG so this is a vent! That's all (I haven't even had a spike today its the depression) it will pass.

Good luck! I only wish you the best!!

Uff.. This one made my eyes sweat a bit. Just sweat mind you! I have managed to drop down to 480 on the verap after starting the D3 reg introduced to me by some saint on here. (I had started having heart palpitations at 600) so I was happy to decrease and hasn't happened since. I just got done with a quick load D3 and things are a bit odd as I'm having spikes every day but they are so much more manageable (like you can ignore them and not rush for meds). I am now on the taper down and have a blood test kit coming to get labs to see if I reached the correct initial dosing. I only had 2 spikes today so (good day so far) trying to take things in stride and learn from folks that have not offed themselves having this much longer than me. We have a huge fire here in Unicorn land (CA) That is now only idk 7 or 8% contained and smells like I'm having a bonfire in the back yard I am assuming something is going rt with the D3 as I've only woke up screaming once this month (my worst month as far as I know)..

First laugh of the day! and thank you for the info

I want to but I'm too scared. I don't think my mind could handle it. I used to have such bad anxiety that I would pass out (prior to cluster) 10 years ago.. My mom had bad mental disorder offed herself in-front of a car. I don't trust my brain to bust. IDK

No . I never made it that far.

Well I sure feel like one but thank you and I'm glad i read the other posts cause you lost me at Hencklels:) I've thought more of the Oregon assisted suicided thing as I'm not sure how clean a job I would with a knife. Anyhow you are sweet for being nice when I am full of mean. I guess I just want the old me back but I suppose that is a dead wish and I should find a new happy like the days I go spike free, they are just so little and my head has never been the same since the first time. I've never not had pain since the first one but just felt grateful that it wisent as bad as was it has been.. I don't know anymore.

Thank you all and sorry for being and ass. I'm in CA and we have a huge fire going on so the air quality is super bad and I'm wondering if that is causing this cycle to last soooo long? It's just depressing that's all. I've never met anyone with cluster and yes I do have hobbies like I mentioned I love to workout and ride but if I am having a "headache" I literally can only rock back and forth and try and control my feet from kicking out with each spike...Not a good way to be on a horse lol. Anyhow thank you all again and sorry for being a jerk I have just been fighting with feeling sorry for myself I suppose...

Just wonder if those 6 folks that viewed this and said nothing have cluster or are just fakes?? Sorry got a bunch of mean in me at the moment.

I don't know about all of you but I'm having an extremely hard time staying happy through this. I've had this brain malfunction for just a bit over a year and a half and I feel like it's robbed so much from me in such a short time. I've nearly stopped believing in depression and just think it must be something that happens to someone that gets overwhelmed by something that hurts them super bad and they can't find a solution to it... I grew up around horses but never could afford them. I always vowed to not be poor as an adult worked hard not to be so I'm comfortable and have had horses for years now. I love the escape of riding but now I feel like I can barley make it out to the facility to groom my most awesome reining mare let alone give her the time she deserves (I may just be being a sap because I've been in a bad cycle for a month now). I had also been taking boxing for about a year and just started to like it but I have had to put a pause on that and am hoping my muscle memory will kick in (I am not one or those girls that worry about buff arms) I like my arm bulges! I have noticed that I just get sad so much .. How do you all stay happy????

I agree and have started to taper down. I just received all the products to start the D3 Reg and am now down to 480 and hopefully will be able to decrease even more.

I am a black coffee kinda chick so maybe ill just stick to that:) Thank you!

Thank you for the response and yes I am pretty happy about all the advise I have received as well. Strange to see how universal the pred is as I give that to my cat for an autoimmune issue he has and and yes I hate the Topomax and I don't really think it help anyhow... I will try the energy shot as well as the higher levels of D3. Just need to pull the instructions on the dosing. Thank you!

This is great info. Thank you for responding to me. It actually took me a long time to get my general to even let me see a neurologist. I don't like the Verapamil as I have such low energy and find it hard to want to work out etc. I did buy a arm strap blood pressure monitor to check my levels and have a stupid watch that goes off from time to time when the ticker slacks off (that's usually when I start feeling really tired). I am trying to taper off it on my own. I've always been sorta a health nut so I've never put an energy drink in my body but guess if I'm putting junk made up of who the hell knows what that slows my heart down there cant be much harm in trying an energy drink. Strange to hear Prednisolone (I give that to my cat for autoimmune) but hey! Plus who the heck trusts Big Pharma these days... Thank you!!!!

Thank you for the response. I appreciate you taking the time and I will check out the new user link. I have watched some of the videos on here about the use of oxygen and proper masks which led me to purchase the ClusterO2 kit from this site and a regulator that lets me go up to 25 (the one I was given from the Doc has never helped and was exactly what the video said was "nothing"). I did receive what I thought was an auto response about vitamin D3 but I still have read a lot about it in my desperate search and went out and bough the fish oil today. I already have everything else except the Super-K and one other item I cant remember the name of at the moment foliate something or another. I have been taking D3 in pretty high doses but i suppose it wont help if my body is not absorbing it. I did see the mention of Busting boy do i hope that means busting out of this!!! Thank you again!

Hello to everyone on here and sorry to everyone on here... I just recently discovered this site (thank goodness). There is still a part of me that doesn't want to believe that this is my new future but it appears that way. All I was doing was sitting there, got up to let the dog in and boom... That fast my life was stolen just like the election. Body went flush, my rt eye wouldn't stop tearing and about every three seconds I was being spiked in the right temple by something forged by the devil. Of course I called the ER and told them of my plight. In this day and age they ran me through the gamete of very unnecessary questions such as if I had been to the Congo of late or allowed anyone to sneeze directly in my mouth etc... Anyhow... I am very confused because after watching some of the videos on here and reading on the Mayo Clinic of things that exacerbate most folks with CH I just don't understand a lot. Example, I can drink alcohol during a cycle without adverse affect? I don't get a swollen or red eye or runny nose? I fired my first doctor because she wouldn't let me see a neuro and kept telling me I had migraine. She then put me on Topamax (which I have found to impair my cognitive ability a bit) and propanol. Neither of those did anything. I continued to have head bangers that made me want to die that lasted for over 3 to 4 hours at a time up to 15 times in a month usually for 3 months and then they would leave for about two weeks. I got so desperate that I started calling everywhere and one late evening when I called I Kaiser (hate Kaiser) I got routed to a Kaiser out of my area, they set me up with a neuro. I was lucky in that he LISTENED and said if you can't lie down and you pace, rock back and forth, no nothing is touching your pain sounds like CH. Problem.. Verapamil is making me sleepy and weak sometimes my heart rate goes so low it scares me.. I am so depressed I am not me anymore! I am a horse rider and a boxer. I've always worked out and taken really good care of myself but i feel myself giving up! I am 41 and have had horses almost my entire life I have missed an the last 3 months of riding because the verapamil is not working like it used to I was on 360mg per day then increased to 480 and the neuro told me that was max I got desperate and upped to 600 now I'm so tired I just cant take it. I've been taking magnesium, B-12, D-3 and COQ-10.. Any insight is so welcomed... I'm getting tired and I don't want to give up. Yes I have oxygen and proper rebreather mask and regulator that's me go to 25 it works sometimes and not other...