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Long Remission Only to Return


charles87sf
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Hey all,

Bit'o background: I started having clusters around the beginning of 2015 with VERY mild symptoms. These continued for a time until 2018 when all hell broke lose for me and my experience of what pain is... What started as 1 30 minute round per day quickly became 4-5 1 hour rounds each day of pure excruciating pain! After seeing a slew of different specialist, I finally chanced upon a neurologist who was able to put a name to what I was experiencing. Cluster Headaches. All the doctors prior to him all said it was migraines, allergies...blah, blah, blah.... Anywho, not much was done unfortunately and I went on living my pain filled life. My cycle finally ended about 4 months after it started. By this time, I had read all there is to read about Clusters so I expected another round the following year... Sure enough, 2019 was the same... 4-5 months in a wave peaking at 4-5 hits per day, each lasting roughly an hour'ish. Thankfully, I have a wife and daughter who dedicated time to learning about this condition and they sympathized. They would help as much as they were able to.... So, the 2019 cycle came and went... and.... fast forward for the next 3 years... I guess you could say I have been in remission... Until this month... January of 2022 and they're happening again. As of right now, it's one attack a day lasting about 25-30 mins... Just wondering who else has experienced a few year remission for it to simply return completely out of left field!

 

Charles

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Remissions are pretty normal for us episodics. I recently skipped two years and then it came back strong and lasted nearly six months. There is really no baseline, CH can vary widely from person to person or year to year. Cycles will vary as well, you can start out slow then they pick up and you are getting hit seven times a day for an hour plus per hit. Mine usually start slow then ramp up and then go down during the whole cycle. Try to keep tabs on it all with a journal so you can get a better understanding of how it all plays out. GL warrior! 

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i agree with xBoss... i am usually 3-4 years between cycles and then have 4-6 month cycles with an average of 2-4 a day for the cycle it has been that way for about 8 cycles over the last 30 years ..the first month is not too bad from a number per day but then the next 2-3 months are closer to 4 a day.  follow all the instructions about oxygen and vitamin d etc that you can find on the site and realize eventually that it will end  

 

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Yep, just when you have this tricky beast and it's timings all figured out - beware, it can, and so often will, throw a completely unexpected curveball at you, even after 20, 30 or more years of entirely reliable, predictable precision timing accuracy. This'll go for cycle timing, time of day/night when hits can be expected, and other stuff not related to timing, like one of the biggest shockers I've learned of - switching to the other side of your head (!!!).

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Hi Charles sorry to hear about your cycle starting up buddy , I'm  afraid it's the same story for all of us who are episodic my friend . As Xboss has said get a journal started it will give you a bit more of an understanding of it . Some of us who are episodic can name the date that are cycles will start same can't it's just the nature of the beast I'm afraid. I'm normally every 2 years but this year I jumped back in to cycle after only 4 month remission , so as I said the beast will do as it wants . Have you been prescribed o2 by your neurologist? Have you been prescribed a preventative such as varapamil ? Can you give us a bit more information buddy . Their are so many great people on this forum that can help you out my friend we are all here to help . The first thing I would advise is getting on to the D3 ragime it's a multi vitamin ragime put together by a great guy on here goes by the name of batch aka xxx . People on here have managed to become pain free for years just by following his D3 ragime.  If you don't  get pain free it will reduce the frequency and pain levels so it really is worth getting on straight away . If you go to search bar at the top of the page and type in D3 it will give you a run down of vitamins needed and loading instructions . I'm sure 1 of the experts on here ie Bej , spiny, CHF of xxx himself will read this and add some more advice plus put the D3 instructions on here for you as I'm a but useless when it comes to that sort of thing 

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https://vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708

This is the first iteration of the D3 Regimen. Batch has made some changes and additions, but this will get you started right away. 

I have been taking this for many years now and for the most part, after the first year, I only have a few hits per year. :) I do avoid stuff, like Epinephrine given by doctors and dentists and MSG in food. 

You have had some great responses and have a lot to chew on now. Oh, in so far as long remissions? Yes. I had one for 10 years. I thought I was cured or outgrew them. Oh, soooo wrong. 

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2 hours ago, spiny said:

I had one for 10 years.

Wow! That's amazing... Do you recall if you were doing anything diffrent during that break? Even if you don’t that's just out right amazing but on the other hand I assume you were devastated by the return.. I suppose if I take anything away from this it would be that miracle breaks for suffering folks can happen and to be very skeptical about being cured and or about the shite show being over. Thanks for sharing this tid bit about yourself. 

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I wish that I did know something that caused it Bosco! The only thing that might have helped is that I got pregnant. I miscarried at 2+ months and the hormone change could have affected my CH, but I was too upset to notice, you know? They were gone after that event.

Then that brings up 'Well, why did they return?' Also, don't know. Can't blame my move north, as I had been living here for 6-8 months when they showed up. But looking back, I can recall two short cycles before the move. I had gotten a concussion a short time before the first cycle.

My first 20 years, I was a low level chronic, undiagnosed. I was on Elavil and one other med whose name escapes me at the moment. Inderal I think. So, I had no idea that I had CH or that they came in two varieties.

That cycle was short, but hell none the less and the second one sent me diving into 'what is this????' Then I took the  the printout of CH to my doctor. Carbemazepine was prescribed at that time. He had been on the Migraine bench till then. I had tried trex once and thrown it out due heartbeat issues bugging me.

Additionally both little cycles I had then were thought to be 'other' things and were treated with Pred of all things and that killed them. Funny how that worked out. As it was, they were both about 2 weeks duration. 

Girl, you are making me think too darn hard for this early!!!:)

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2 hours ago, spiny said:

I wish that I did know something that caused it Bosco! The only thing that might have helped is that I got pregnant. I miscarried at 2+ months and the hormone change could have affected my CH, but I was too upset to notice, you know? They were gone after that event.

Then that brings up 'Well, why did they return?' Also, don't know. Can't blame my move north, as I had been living here for 6-8 months when they showed up. But looking back, I can recall two short cycles before the move. I had gotten a concussion a short time before the first cycle.

My first 20 years, I was a low level chronic, undiagnosed. I was on Elavil and one other med whose name escapes me at the moment. Inderal I think. So, I had no idea that I had CH or that they came in two varieties.

That cycle was short, but hell none the less and the second one sent me diving into 'what is this????' Then I took the  the printout of CH to my doctor. Carbemazepine was prescribed at that time. He had been on the Migraine bench till then. I had tried trex once and thrown it out due heartbeat issues bugging me.

Additionally both little cycles I had then were thought to be 'other' things and were treated with Pred of all things and that killed them. Funny how that worked out. As it was, they were both about 2 weeks duration. 

Girl, you are making me think too darn hard for this early!!!:)

Sorry Spiny! Thank you for responding in such depth though!!

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No problem Bosco. I hope that it helped a bit. There is so much that we don't realize or connect till years later, you know? It took knowing that pregnancy can stop a Chronic dead in its' tracks to piece the bits together many years later. 

I had to fight for my diagnosis with a Neuro when I got a proper cycle too! Actually had to take my husband to get the guy off of the Migraine train! It was not encouraging! But he and I get along fine now. I go once a year and get my one script filled and push him to get patients on the D3 Regimen. He will flip over the new studies using MM!!!! :D I can't wait!

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On 1/13/2022 at 4:41 PM, spiny said:

 Oh, in so far as long remissions? Yes. I had one for 10 years. I thought I was cured or outgrew them. Oh, soooo wrong. 

Spiny? U wore pink lensed glasses for migraines in the 70s (for all thru the 70s? 10 yrs straight?)....and u then after that? (When after that?) had a 10 year remission?... pls? What were, roughly, ur dates of pink glasses and ur dates of remission? Like roughly months and yeararspls? And thanx? 

Did u, by chance, use drugs during the 60s-70s. also?  Hallucinogenics? If this is too personal we cld go private...    just trying to get a better handle on the dates and firm things up a bit more. I also had a 10 year remission - if i am correct to see the headaches on a continuum? Thanx 

Edited by Sue mcdonald
~
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@charles87sf

I'm betting most of us have stories about clusters coming and going when they aren't "supposed" to.  As everyone on this thread has already mentioned, it's sort of a crap shoot.  You hear stories about folks getting clusters on the same day, same time, on a very specific schedule.  And that certainly happens.  But my guess it's also almost as common for them not to follow a strict schedule.  But, you are on the best site in the world for clusters and you are hearing from folks that have more collective experience and knowledge than anywhere out there, including strictly medical sites.  Don't hesitate to reach out!

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Sue, I had them and wore them for ~two years. After that, I was no longer in an environment with those stupid lights. I went into remission a good 3-4 years later. 

The drugs that I was prescribed made drinking and all that off limits, so no, no drugs or anything for the 70's. I also had a script for Thorazine for my nocturnal hits for two years. Pretty shocking today. My doctors, at that time, felt that my headaches were caused by a concussion. They did not even think they were migraines. That diagnosis came a few years later. when I moved to another state and went to the ER. It is rather complicated actually, but that should give you enough information to work with. Then came the glasses. 

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4 hours ago, Bohm said:

You hear stories about folks getting clusters on the same day, same time, on a very specific schedule.  And that certainly happens.  But my guess it's also almost as common for them not to follow a strict schedule. 

...or BOTH. 23 yrs of clockwork regularity here, cycles and hit times...then cycles and hits became (thankfully) less and  generally erratic for years more. my personal belief, backed by nary a whit of scientific support so wild-ass speculation, that the "aging out" of CH that every one of us has been "promised" (and some achieve) may be due to aging changes in our circadian rhythms...or, more likely, the CONTROLLER of same...the hypothalamus. 

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19 minutes ago, jon019 said:

...or BOTH. 23 yrs of clockwork regularity here, cycles and hit times...then cycles and hits became (thankfully) less and  generally erratic for years more. my personal belief, backed by nary a whit of scientific support so wild-ass speculation, that the "aging out" of CH that every one of us has been "promised" (and some achieve) may be due to aging changes in our circadian rhythms...or, more likely, the CONTROLLER of same...the hypothalamus. 

Me to Jono same dates for 39 years until this years extra cycle that started end of July 

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22 hours ago, jon019 said:

.then cycles and hits became (thankfully) less and  generally erratic for years more.

This is something to hope for Jon. The other side of your post that seems scary is the erratic part. I like knowing when I'm going to hell for a stent (don't know exactly why) maybe it's because I'm a bit OCD in that way or maybe it's because I can mentally prepare? I've heard so much about aging out and I'm unsure if I can trust that (not that you are inferring as much. I don't want to give myself false hope as I am somewhat new to CH and received a diagnosis fairly quick with comparison to most (I was a tyrant thinking I would surely die from the hits). I am 42 and started having CH at 38 so as much as I would love to believe  that maybe in my 50es I might go into remission I don't want to set myself up if that makes any sense? Anyhow I have been blessed by finding this site and all the amazing people on her so I take that as a win!   

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On 1/15/2022 at 6:41 PM, BoscoPiko said:

The other side of your post that seems scary is the erratic part.

....it wasn't a choice, but you make a good point about predictability....and overall i "preferred" that part of ECH to CCH. always interesting to hear other clusterheads opinion on THAT discussion. have gone back and forth myself about which is "betta"...horrific but predictable Episodic or lesser but erratic Chronic....

...really it's just the same beast in different guise. ya gotta adapt and adjust the strategies learned and the tools collected...

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Hey everyone!

Sorry for the late response to all that has been said in the last week! I can't begin to thank you all enough for the support and information that has been provided. I also can't believe how much attention this post has gotten as well. I will attempt to respond to all the messages in time. Thank you again! 

 

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On 1/12/2022 at 3:45 PM, xBoss said:

Remissions are pretty normal for us episodics. I recently skipped two years and then it came back strong and lasted nearly six months. There is really no baseline, CH can vary widely from person to person or year to year. Cycles will vary as well, you can start out slow then they pick up and you are getting hit seven times a day for an hour plus per hit. Mine usually start slow then ramp up and then go down during the whole cycle. Try to keep tabs on it all with a journal so you can get a better understanding of how it all plays out. GL warrior! 

Hey xBoss

I never kept a journal, but after reading this post, I believe I will start! It would be nice to have something to refer to when asked my doctors and the such. 

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On 1/13/2022 at 11:22 AM, Shaun brearley said:

Have you been prescribed o2 by your neurologist? Have you been prescribed a preventative such as varapamil ? Can you give us a bit more information buddy .

Hey Shaun,

So, during my first cycle, that neurologist that I previously mentioned prescribed verapamil and cyproheptadin. No oxygen was ever prescribed though I was put on oxygen the few times I went to the ER(I no longer go to the ER when hits occur. I quickly realized there wasn't much they could do for me... Also, oddly enough, it seemed ER doctors didn't know what I was talking about).  After that cycle, however, is when I went into remission. I would consider that period my first, and so far, only remission. Again, this is all relatively new to me. It all began around 2015 with very mild symptoms(droopy eyelid, and a bit of pressure)... 2018 hit and all hell broke lose. The cycle lasted for roughly 4-5 months and I've been in remission until now. 

Some additional info:

  •  I'm 34 now so I was about 28'ish when all this started.
  • Despite being told this doesn't occur due to injury, I began having the initial symptoms RIGHT after suffering a head injury. I took a humvee turret door to the back of my head. It wasn't a flat piece either. A bottom of a screw is what made contact with my head. I went unconscious very briefly and was then seen by the on base doctors. They gave me a clean bill of health, a handful of ibuprofen and sent me on my way. The mild cluster symptoms started maybe 3 months after that. My clusters are always on my right side and the I took the door to the left side of my head.
  • I was a heavy drinker in my youth and a smoker as well. I've pretty much cut out all beer(I have an occasional 3 fingers of scotch and that doesn't affect me) and I quit cold turkey on the nicotine after smoking for 15 +/- years(yeah, I started smoking early....). Both cigarettes and alcohol seem to be a trigger for me thus the decision to quit both. 

That's about it... any other questions?

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On 1/13/2022 at 6:41 PM, spiny said:

You have had some great responses and have a lot to chew on now. Oh, in so far as long remissions? Yes. I had one for 10 years. I thought I was cured or outgrew them. Oh, soooo wrong. 

Hey Spiny,

When I logged back in, I was overwhelmed with the response!! The amount of support and information that has been provided is tremendous and I'm grateful to have found this community! I'm looking forward to sharing information and, hopefully, becoming a contributing member to this topic. 

Charles

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51 minutes ago, spiny said:

For CH, I think that this is the best place to be for support and help and new news!!! I might be a little prejudiced though! :)

I share the same view / prejudice as Spiny. :)

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