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BoscoPiko

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Posts posted by BoscoPiko

  1. 3 hours ago, Cast Iron said:

    I regularly have spikes on my left temple, while my CH is on my right. These spikes are in many cases the onset of an attack, but not always. It makes me aware that the beast is awake and wants to come out to play. This does not mean I stop doing what I was doing of want to do, except when I kinda feel an attack is eminent, I start the O2. What also helps me when I have a little spike is to go outside for a walk in the fresh air, this also clears the spike quite rapidly. Some people have spikes in the Great Occipital Nerve which is often an indication that they will soon enter into their cycle. I see the spikes on my temple normally only when in cycle, but on the other hand I am chronic. Over time I can now feel what kind of spike it is, is it a random one, or because I have eaten something that is on the ‘NOGOOD’-list or went to bed far too late.

    As J says, the beast comes in different forms and shapes, where a spike for one is the start of a cycle, where for others it is a morphing of a regular pattern to the next.

     

    ATB  

    Hi there,

    Yes that has always been the case for me as well. This time is a bit different with the fact that August is my normal worst month for CH. Normally I start getting random spikes a few weeks prior and sometime I can ramp up on a few preventatives and hold the killer at bay for a bit (just a bit) they always find a way to come out. Since the start of the D3 which I did not load properly, I just keep spiking so I suppose that's positive....I am going to start over (to a certain degree) and see if that helps.. Thank you for the response!

      

    8-15-21

    11:30 AM

    1-Spike

    Mild No Medication

     

    8-17-21

    12:00 PM

    1-Spike

    Mild No Medication

     

     

     

     

    8-19-21

    10:30 AM

    4-Spikes

    Medium-Nasal Medication

    Yeah Day!

     

     

     

    Yeah Day

     

     

     

    Yeah Day!

     

     

     

    Yeah Day

     

     

     

    8-24-21

    11:30 AM

    1-Spike

    Mild No Medication

    8-25-21

    9:44 AM

    1-Spike

    Mild No Medication

    8-26-21

    6:00 PM

    1-Spike

    Mild No Medication

    8-27-21

    8:30 AM & 12:30 PM

    2-Spikes

    Mild No Medication

    Yeah Day

     

     

     

    Yeah Day

     

     

     

    Yeah Day

     

     

     

    8-31-21

    12:30 PM & 1:28pm

    2-Spiks

    Med No Medication

    • Like 1
  2. Thank you both for the responses. The spikes are the same as what I get when I get a full blown CH but just not in succession and intensity if that makes sense. I do log them (time, and intensity If its just spikes and not a full blown CH). IDK maybe I am getting the benefit of the D3 and the spikes are as good as it gets for now? I just had an MRI on March 17th so I don't think all that much could have changed from then? I just sent my blood work in yesterday so I should have that back here soon. Maybe I will just take a few hits of 02 and try not to miss my boxing lesson as I always feel like such a looser for not working out... Again thank you both!   

    • Like 1
  3. 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!    

    • Like 1
  4. 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:)   

  5. 53 minutes ago, BoscoPiko said:

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

    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…

    • Like 1
  6. 9 hours ago, ThatHurtsMyHead said:

    BoscoPiko,

    Our biological clock is something odd.  The docs don't know much about our CH, but one thing they can see on scans during an attack.  The Hypothalamus in our brain freaks out during an attack.  The Hypothalamus regulates most anything that's on a cycle for our bodies.  Wake, sleep but also sex, hunger, temperature some emotions and other things that follow a rhythm. 

    New doc definitely sounds in order.  I've learned over the years that we're our own best advocate.  It's rare that a doc actually listens :( 

    J

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

  7. 1 hour ago, spiny said:

    Yes, getting pain free will make your brain happy. And plenty angry with the ones who were supposed to fix it and failed miserably!! Why? Because they DID NOT LISTEN!!

    Venting is certainly understood here!! We all get really frustrated with lousy doctors who insist that we have something we don't and refuse to listen to what we are saying. Women in particular face this wall of ignorance. :wacko: Some fools still think that women can't take pain the way that men can and are just wimps!!! Well, let them pop out a 7 lb'er and say that. 

    Biological clock refers to the natural wake/sleep cycles of our bodies and the hormones released at certain times during that 24 hour cycle. So, you get some that are released when you sleep and some when you are awake. Ergo, the timing of your sleep should be pretty regular to help regulate those hormones. 

    I am so happy to read that the D3 is helping!! It really can be amazing. Just vitamins to get rid of this shite? Yes please! :) Keep taking it! Have you had your labs yet to see where your D is currently? You might need a bit more to get to home base!!

    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!

    • Like 1
  8. 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.        

  9. On 8/24/2021 at 7:13 PM, jon019 said:

    .....different strokes for different folks.....aint no absolutes in clusterville....

    .....for about 7 yrs verapamil was a relatively successful med for me....manageable side effects and knocked out about 70% of hits and seemed to make hits lesser in intensity. 5-6 cycles per yr so a prevent was critical. nothing less than 480 mg/dy worked (had to be IR)....would go to 1000+ in high cycle. heart function monitoring essential, and extra fiber/water to keep things moving along. a serious med for sure....for a serious condition. eventually got tired of the constant fatigue and being med reliant and dialed in OXYGEN/energy drinks, D3, w/Zomig for breakthroughs (rarely) for my ultimate management....w/chemo, age, and other life changes being additional factors i wonder about... 

    .....i'd do it again if i didn't know now what i didn't know then, or what's a Clusterbusters for? but, the alternative options presented here are not always possible, practical, or suitable for all...as far as i'm concerned, verapamil is an effective prevent for a good number of folk, and remains a valid tool in the ammo belt...

    best

    jonathan

     

    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)..       

    • Like 2
  10. 8 hours ago, FunTimes said:

    Look into RC seeds (Rivera Corymbosa seeds). They can do the trick and no tripping for most. You can order them online and have them in a few days, Grind them up in a pepper mill, soak them in some spring water for about an hour then drink them down.  They can work just as well as MM sometimes with less mind altering effects.  You can read all about them on this site by putting RC seeds in the search bar at the top of the page. 

    I guess your doctor forgot to give you the jerk free pass card when they told ya you have clusters.. I got 2 of them and a card allowing me to be an ass twice a week. 

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

     

  11. 1 hour ago, Bejeeber said:

    The psychedelics used for preventing CH cycles can indeed also have the side effect of making you happier. Of course YMMV. Personally I'm convinced they've generally lightened my mood. And this "mushrooms make ya happy" deal is moving beyond conjecture, with all the scientific attention now being heaped upon the subject.

    Like this bit from Web MD / New England Journal of Medicine / London Imperial College:

    Study: 'Magic Mushrooms' May Be Best Drug for Depression

    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

  12. 5 hours ago, Ganuchi said:

    You aren’t a jerk - just a cluster head in excruciating pain.  I am sure the wildfires and poor air quality are contributing to your suffering.  I am in the NorthEast but when we have weather issues (pressure spikes and drops, blizzards etc) it definitely plays a role.  You may want to consider buying an air filter for in your home.  My office at work is very stuffy etc and it has helped since we put a filter in to try to clean up the air.

    We all feel this way in the midst of it.  My last episode all I could think was trying to make my way into the kitchen and find the knife block to use a Henckels to put myself out of my misery.

    Be well and hang in there!

     

    5 hours ago, Ganuchi said:

    You aren’t a jerk - just a cluster head in excruciating pain.  I am sure the wildfires and poor air quality are contributing to your suffering.  I am in the NorthEast but when we have weather issues (pressure spikes and drops, blizzards etc) it definitely plays a role.  You may want to consider buying an air filter for in your home.  My office at work is very stuffy etc and it has helped since we put a filter in to try to clean up the air.

    We all feel this way in the midst of it.  My last episode all I could think was trying to make my way into the kitchen and find the knife block to use a Henckels to put myself out of my misery.

    Be well and hang in there!

    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.  

  13. 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... 

  14. 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????     

  15. On 8/24/2021 at 12:52 PM, Shaun brearley said:

    Hi I'm new myself on this site , but i agree with That hurt my head the amount of varapamil your on is not good i was only on 280 mil a day and it gave me heart block . Not a good med to be on 

    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.

  16. 7 hours ago, spiny said:

    You can down a V8 Energy Drink or regular coffee too. Both work for me thankfully as the Energy drinks ans shots are so revolting that my tummy says 'Oh hell no!' and immediately rejects them!  :rolleyes:

     

    7 hours ago, spiny said:

    You can down a V8 Energy Drink or regular coffee too. Both work for me thankfully as the Energy drinks ans shots are so revolting that my tummy says 'Oh hell no!' and immediately rejects them!  :rolleyes:

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

    • Like 2
  17. 17 hours ago, Bejeeber said:

    Glad to see you're getting such good advice on here Bosco.

    I'm going to agree with and comment further on a few of the recommendations:

    • Yep, pred can indeed supply a couple weeks break, but one more thing to watch out for with it is that some of us find the CH can then come back with a vengeance.
    • What looked like a D3 auto-response that you received may have actually been a personal response from the world's top expert on D3 regimen for clusters, if it came from "XXX".
    • It is my impression that the CH'ers most successful at suppressing it, and often shutting it down for long periods of time - like years on end - have mostly abandoned the pharma for the very effective busting, etc.
    • An energy shot will have that much less junk to consume in it than an energy drink.
    • Topomax is pretty much universally reviled among those who have been on it, precisely for the cognitive hit you noted, not to mention its general ineffectiveness

    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! 

  18. On 8/12/2021 at 7:20 AM, ThatHurtsMyHead said:

    BoscoPiko,

    I'm no doc, but that amount of Verapamil sounds scary.  If your heart rate is too low, it can cause other very serious medical conditions.  I'm a huge proponent of busting.  It gave me my life back and many others on here.  

    As FunTimes mentioned take a look at the new users info at the top of the page and the ClusterBuster Files section.  Energy drinks can really help the individual attacks.  For my night hits I keep an energy drink on the coffee table 24/7.  As soon as I wake with a night attack, I slam half the can and get on the O2.  Make sure you stay on the O2 for 10 mins or so after the attack stops and it'll help delay the next attack.  I've never had an issue falling asleep after the energy drink.  Post hit exhaustion and I'm out like a light (till the next one anyway :(   (2nd half of the energy drink is for the next attack).

    Oh, on Verapamil.  I know most docs script it as a first thing to take but...  Studies have shown it's maybe 5 to 10 % effective.  If you're in a really bad place a prednisone taper is an option.  Definitely don't recommend that route for more than one (short) round though.  When you're about 2/3rds away through the taper, CH comes back.  From memory, it'll give you about 2 weeks pain free time.  It's not long, but sometimes is long enough to regroup on your avenue of crushing the beast.  Definitely don't do more than one round of pred though.  It'll wreck your body. 

    Staying away from foods that are high in Tyramine should reduce your frequency of attacks.  Tyramine is a natural inflamatory and is present at some level in nearly every food.  It's a byproduct of fermentation and aged foods breaking down.  No fermented cheese, preserved meats or old fruits and vegetables.  

    J

    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!!!! 

  19. On 8/12/2021 at 5:00 AM, FunTimes said:

    Welcome to the site. Many things on here for you to try out but the first thing you should do if you have not already is click the New User link at the top of the page. This will give you a good overview of things on this site. You said you have oxygen so you have a good head start on this game. Make sure you have a good mask that does not let any outside air in when your using it and that you are never waitin for the bag to refill. You will need o\to work on different breathing techs until you find the one that works for you. Some like to breath fast and others take deep breaths and hold it, this will need to be tweaked until you find what works best for you. Another trick to the oxygen is to down a 5hr energy drink or very strong coffee to help the oxygen kick in a little faster for you. 

    You will want to look into the Vitamin D3 regimen that one of our members has developed, his name is now XXX on this site and he will answer any questions you may have.

    Busting is another option you will end up running into here and you will have a lot of information to read up on for that also.

    Main thing is you are now in a good spot to fight this and people around here will help you along the way with things they may have tried. Poke around and ask questions!

    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! 

  20. 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...                

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