BoscoPiko
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Posts posted by BoscoPiko
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7 hours ago, Ganuchi said:
As another chick in her 40’s I considered the Botox too, but my fear of needles outweighs the potential benefit. I did read recently about success with Botox for CH but not traditional Botox. Apparently they stick the needles up your nose to hit nerves in the head……the thought turns my stomach so I would probably have to be knocked out to even consider that……..but for those less squeamish it might be an option
Hi Ganuchi,
Are you sure about the up the nose thing? I looked it up and this is what I found: The guidelines recommend Botox is given as a series of between 31 and 39 small injections. These are given under the skin or into the muscles in and around the head of the forehead, above the ears, and into the neck. The person doing your treatment will have been trained to provide Botox for chronic migraine. (Now mind you this was a not an in depth search just a quick google). I too am super scared of needles so I don't know that I could last through the series of pokes but I do tell myself that I've made it through a 6/hr. CH so maybe I could but could I survive all that spider poison ? IDK...
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15 hours ago, jon019 said:5 hours ago, Ganuchi said:
As another chick in her 40’s I considered the Botox too, but my fear of needles outweighs the potential benefit. I did read recently about success with Botox for CH but not traditional Botox. Apparently they stick the needles up your nose to hit nerves in the head……the thought turns my stomach so I would probably have to be knocked out to even consider that……..but for those less squeamish it might be an option
Wow ok then.. I did not know that...And that's a bit of a game changer.. I think that changes things from a maybe to a hard no.....
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On 5/22/2021 at 10:34 PM, jon019 said:
....good luck! years ago i was the patient of a research neuro that did early studies on botox for migraine. she told me they were delighted with results. had asked to be included in the study....cuz why not?.....she told me "oh sorry, it doesn't work for CH". i sadly smelled money as the market for M beats CH....sigh. keep us informed, i have heard of it helping some of us.....
Uff.. I know this is old but I was just set to try this out on the 28th not the actual just a consult.. Just because.. Well because I'm a chick in her 40's and I thought well maybe??? Plus if a few diapering wrinkles resulted too.. uh ok cool.. Don't care enough about the wrinkles as I hate needles so if its a no go.. its a no go but you did mention different folks different folks? So maybe?
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1 hour ago, spiny said:
Oh, I'm a girl when it comes to coffee. Leave out the sugar if need be, but I want my cream in there!!
That's ok too! Tell me I have to go to the dentist and watch the crocodile tears flow:)
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Just now, BoscoPiko said:
Agreed!
About the coffee needing to be black to be coffee!
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3 hours ago, Ganuchi said:
I too get “spikes” which I consider shadows which will jolt me out of my seat. I will generally just close my eyes and take some deep breaths for a few and then continue on with my day. Sometimes it’s a signal of the Beast awakening other times no. I have also experienced the odd side switch too.
And I drink black coffee too…..if there’s milk or sugar in it then it isn’t coffee in my book…….LOL
Agreed!
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Dident
Just now, BoscoPiko said:That's strange... I responded to this but I don't see it here now.. Any how thank you Spiny for the response. I know I'll never get used to the pain but I am somewhat used to the side I get it on so when I get one on the other side it is scary! I love coffee and my husband thinks I'm nuts for liking a good old americano most of the time just black. I'm not sure if my computer is on the fritz or if it's me or both? Anyhow I sure am happy to have found this site. Everyone has been most helpful even when I'm full of mean. I did find out that I cut my D3 loading short after talking to XXX so I have re-started for a few days and have not had spikes for 2 days o (knock on wood). I am hopeful that I will make a little headway. I understand that I can't expect 100% but something is better than nothing rt.
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3 hours ago, spiny said:
Bosco, I just had my non-CH side spike today. I was a the dermatologists when it happened and it spooked the heck out of me!!
What causes it? I don't know. But I have had them before and my son gets them , but no CH. Hopefully that is the end of it! The Equinox is my cycle start time, so yea, I am a bit wigged out.
I took caffeine for it. Might not be the best choice for all, but worked for me.
ATB!!!
That's strange... I responded to this but I don't see it here now.. Any how Thank you Spiny for the response. I know
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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
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Well I did talk with the D3 super nicest guy in the world and turns out I did sorta botch it a bit... Not entirely.. But I certainly did not get it correct...
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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!
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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!
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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:)
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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…
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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.
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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.
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!
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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.
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18 hours ago, Shaun brearley said:
I've got to be fair I've not given the D3 a go yet as im in the middle of a shit cycle so im giving busting a go . Good luck with the D3 hope you get success
Good luck! I only wish you the best!!
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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)..
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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
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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:
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
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1 hour ago, Bejeeber said:
Also, I hope it's safe to assume your boxing hobby doesn't involve you being hit in the head.
No . I never made it that far.
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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.
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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...
HGC-Human Chorionic Gonadotropin
in General Board
Posted
Just curious if anyone has had any experience with this hormone and if it has helped them or not? I seen some posts on here about how some women become CH free when prego and it made me wonder about this old fad diet hormone people used to take? If I recall correctly it tricks ones body into thinking its prego? Just wondering?