Jump to content

Questions for Episodic Sufferers


Recommended Posts

I wonder if some of you who have suffered with episodic CHs would be able to answer some questions...

-Do you have signs that your cycle is ending and what are they? 

-Do you still get “pangs” or even shadows when youÂ’re not in cycle? 

-How does it start when it returns?

-Do you remember the first cycle of your life?  Mine has been very mild compared to your stories and IÂ’m wondering if that is expected and then it gets worse over the years? (I have read that some of the meds are suspected to cause more frequency/severity, that some people have long remissions and some have changed from episodic to chronic).

Last time I wrote the HAs had come back after 3 days pf but I've now been 6 days pf with only the D3/cal/mag/fish oil regimen.  I'm wondering if it's the regimen or end of cycle. I definitely feel like it's the regimen (thank you, CHfather for suggestion to try this!!!!)  If things continue to go well and I get brave enough, I will bring the supplements down to a maintenance level and report my experience in case this info can help others (I know the official "reporting" on this should go to ch.com and I will get over there at some point).

Thank you for your input and support.  So grateful!

Link to post
Share on other sites

I am episodic.

The only sign I have that a cycle is ending, is waking up after a no CH night. No signs.

I get pangs or shadows out of cycle if exposed to a trigger.

It returns when one night I wake up with that familiar pain. No warnings.

My first was a "sinus" problem, so I thought. Not a hard core pattern.

I treated my sinus or tension headaches with ice and caffeine until I just couldn't take it anymore. Then I went on the usual meds. Triptons, Topamax, beta blocker and some other stuff. I followed that program for about one year. I realized the cycles were more painful and more frequent. I quit doctoring.

I started using tiny amounts of hallucinogenics about 6 years ago. My cycles are one or two a year and the pain level is fairly low. Also an attack lasts about 5 minutes rather than a hour. On occasion I still have a stubborn cycle.

But I know it is just a reminder of what use to be.

I personaly don't care for mega doses of anything. But that is me.

Hope this helps answer your questions.       :) Leslie

Link to post
Share on other sites

Hi Solace:

I've been chronic for the last 8 years.. "normally"..3-4 attacks a week and then maybe nothing for a week..it's very erratic..and makes it hard to track on what preventatives worked and which don't. 4 years ago I went, what I called episodic, I guess it's a "high cycle" for chronics. When I start getting 1 a day for a couple of weeks and then 2 a day and then 3 a day...I know it's coming on. It works itself to a peak (this year 8 a day), tapers down..5,3,2 until it just goes back to "normal". Last night was my first pf sleep in 3 months with no meds. I think it has got worse over the years...my first high cycle year only peaked at 3 a day. I can't say for sure that any meds actually busted the cycle..one year I might think something worked and the next year it won't. The only thing I know for sure that provides some relief are the Triptins. None of the preventatives have proven to be consistent. This year I just did 2 shroom doses (thanks to the good folks on this site) and it looks like I'm coming off the cycle...did that work ?..only next year will tell. Another unusual condition for me that lets me know I'm headed for trouble is they switch from the right to left side during high cycle. "Normally", they're on the right side. One night.. a few years ago..I had it on both left and right sides at the same time for over 2 hours. That one sent me to ER begging for head amputation...Sorry my answers are so ambiguous.. it's just that nothing seems to be consistent from one year to the other.

Dave

Link to post
Share on other sites

Thanks so much for the responses. 

Dave... I so hope you find lasting relief.  I'm sorry you've had such a hard time.

I have been more and more hopeful after each passing pf day, but keep wondering if this is end of cycle and what lies ahead.  This affliction is insane and it's hard to know what to do at this point.

Lynn... My first HA was similar and I know I'll never forget it either.  Of course, feeling it again and again and again doesn't allow you to forget it!!!

Leslie... your info is helpful.  Both of your stories make me feel like I should be more proactive in the prevention area instead of waiting for it to come back and losing time with my kids/life in general.  Plus, it's just scary to live with this hanging over you... never knowing when it will be back and how severe it will be. 

I sleep with an insulated bag next to my bed... it has cold packs and a Red Bull in it.  I am holding off on O2 till I see Neuro in July to see if I can get medically (that will change if HAs come back). I also take the RB with me wherever I go now.  However, I'm still afraid I'm gonna get an attack that is too intense for RB to work.  A few weeks ago I was watching one of my boy's little league games and the RB was in the car on the other side of the fields.  I got some pangs and panicked that I would never make it to the car.  I was freaking out that an attack could be witnessed by my kids and everyone there.  Pangs subsided and turned out ok but I don't know how you all have lived with this year after year.  My heart goes out to all.

Link to post
Share on other sites
If things continue to go well and I get brave enough, I will bring the supplements down to a maintenance level and report my experience in case this info can help others

From what I can understand about the D3 regimen, the overall goal is to shift your body's pH from acidic to alkaline, thereby reducing systemic inflammation.  So I think one way to test whether you want to drop to a maintenance level, without as much risk of finding out you weren't ready yet, is to buy some pH test strips and see what your level of acidity/alkalinity is.  They work simply and very quickly with any bodily fluid, and they're not very expensive.  I got mine at Whole Foods, but I suspect that any place with a strong supplements section will sell them.  You might know that there's a lot of speculation that most of our bodies are too acidic (here's one brief discussion of that: http://altmedicine.about.com/od/popularhealthdiets/a/alkalinediet.htm), so maybe it's something you might want to think about in the longer run, for yourself and your family, even when you're out of cycle.  (I'm not pushing this. I didn't know anything about it until I did some reading to learn more about the D3 regimen. But it does feel sensible to me.)

Link to post
Share on other sites

CHfather... are you saying I should pee on my pool test strips to see what my acidity/alkalinity level is ?  Thanks for your kind concern, Solace..All the best to you, also..This has been one of the worst years ever..of course...I probably say that every year. I'm cautiously optimistic the shroom treatment will help.

Dave

Link to post
Share on other sites

CHfather... I will look around to find ph strips.  I find this part of the equation interesting as I wasn't REGULARLY drinking the lemon water until day 7 on the regimen.  HAs were back on day 6 & 7 (after 3 day break) but now pf day 8-14.

I also wonder about the D3 connection.  I know there are many theories about many possible causes but I will say this... my CH started during a very dark, rainy spring and following a long midwest US winter.  I was probably indoors more this past year than I can ever remember.  There was very little sun this spring until the last few weeks.

Thank you!  I sincerely appreciate your knowledge and support.

Link to post
Share on other sites

Solace, you give me a chance to briefly clarify what I was saying.  There are whole diets (dietary regimens) devoted to increasing one's alkalinity.  My daughter, who began about 6 months ago eating very little meat, very little sugar, very few processed foods, etc., now has a highly (but positively) alkaline pH.  She also takes the D3 maintenance regimen, in part because I'm not sure that I'm correct in understanding its primary purpose as shifting acidity to alkalinity.  So my overall point there was not necessarily that you/one should take a lot of D3 on an ongoing basis, as much as it is to say that if being more alkaline/less acidic has these demonstrated benefits for so many people related to CH, maybe there's something to it as a general approach to wellness, and steps like drinking more citrus or shifting your/one's diet toward alkalinity-increasing foods will have general benefits.   http://www.rense.com/1.mpicons/acidalka.htm

BTW, my daughter's CH pattern was much like the others: tolerable headaches for relatively limited time periods followed by increasingly strong HAs for increasingly long periods.  I think that's fairly typical.  I think they also become less tolerable when you realize that they're likely to keep coming back.  Maybe D3 and all that will change things.

Link to post
Share on other sites

Solace,

I distinctly remember mine starting in the spring of 1988.  Had a K4 or so one day, but didn't last too long.  The next day was a K6 and went to the emergency room. 

Episodic and wasn't properly diagnosed till around 2004.  Actually self diagnosed... I found CH references on the internet and brought some printouts to my doctor.

I always get crazy dreams very vivid as my cycle is starting.  They go away as my cycle ends.  (started getting them again a few days ago, so I'm off for my 3 month or so preventative bust in the next few days.)

Oxygen and then Seeds have been a life saver for me!

Jeff

Link to post
Share on other sites
-Do you have signs that your cycle is ending and what are they? 

If I have them I cannot identify what they are.

-Do you still get “pangs” or even shadows when you’re not in cycle? 

Yes sharp little twinges in the trigerminal nerve complex

-

How does it start when it returns?

Twinges show up,then the shadow. . a headache here and there and then bango 3 to 7 a day within a week.

-Do you remember the first cycle of your life?

No mine started as individual headaches for the first years but I remember the first CH. I dont think I will ever forget that.

Link to post
Share on other sites

Everybody remembers the first one. Michael was 12 years old. He was walking down the hallway when wham!, for no apparent reason, like someone hit him over the head with a sledge hammer, knocking him to the ground, scaring the hell out of him and the rest of us. Too bad it wasn't the last one.

Link to post
Share on other sites

Wished it were the last one. Mine was in the EM club in Mainz W Germany. We had just left the motorpool and went to have some beers. I tried to drink it away, that sent me to the dispensary, they restrained me and knocked me out with morphine.  ;D  I made the MP blotter for tearing up the dispensary. Oh to be young again ::)

Link to post
Share on other sites

I was 17 when mine started. Nobody had any idea what they were. Had CAT scans etc then they went away. I (knock on wood) usually go years between. I think it took 2 cycles before I finally researched them and figured it out. Alcohol trigger was a big clue. I'm in a cycle again after a 5 year remission!! I am hoping the older I get the further apart they get. I usually have migranes for a week before they hit. My neck gets stiff too. I am, again knock on wood, perfectly fine between cycles. No migranes or even regular ha's. Everyone asks me what I think triggers them and I have no idea. I got divorced 3 years ago and lived on Miller light and cigg's and partied like no tomorrow for over a year and never had a cluster. I have calmed down now and here I am...wish I knew why I am having them...I wouldn't do what ever it is!!

Link to post
Share on other sites

-Do you have signs that your cycle is ending and what are they?

Not really, perhaps only few last hits get milder/shorter, but not always.

-Do you still get “pangs” or even shadows when you’re not in cycle?

Yes I get shadows when I am in remissions a lot.

-How does it start when it returns?

It starts out of nowhere, though I feel there are few signs when it starts, like pain in liver, cramps/sore feeling in neck etc.

-Do you remember the first cycle of your life? 

Mine first cycle in my life was perhaps 4-7 days long, 1 hit a day when I woke up, lasting for 40 minutes or an hour.

Then over the years it got longer and hits became stronger.

I never really took many meds, apart maybe few times, mostly because I was lucky to read on Oxygen early, so I didn't have to take pills and other meds, currently trying to find stuff to bust next cyclone, though it is pretty hard around here.

Hope it helped.

Link to post
Share on other sites

I was driving down IN 67, back to school, in March of 1990 when my first one hit. Six weeks, each spring of misery with more hits and higher kips each year. Finally, in 97 I figured I must have a tumor or something so went to a neurologist and was diagnosed. He gave me Pred and ended the cycle, but I was 5 weeks into it already. Since 97, my cycles have jumped around to different times of the year, steadily increasing in Kip and frequency, but always staying right around 6 weeks in length, Until this cycle; I'm on the 9th week :'( but feel like it's finally winding down. ( thank god, cause it's been really bad this time). Imitrex injection was my first "miracle drug" then O2, but I'm really tired of just aborting 3 to 8 HA's every damn day.

  now, on to your questions, Solace. Take note though, I have not tried busting, YET.

1> I do sort of have signs that my cycle is ending in that the number of hits per day reduces and I just start feeling better overall. Although, this year since it has gone on for 50% longer than it ever has, I've been fooled a few times thinking i was done with them.

2> I do get "pangs" twinges, what ever you want to call them several times during my remission but I would not say I get shadows.

3> When it returns, I get the "pang" AND shadows. Usually I get a hint that the bastard is on his way from a beer.

 

   My condition too, is mild compared to most on this forum and I am thankful for that. However, after 21 years of going through this, and putting my wife through it, I'm ready to step into the uncharted waters (for me, at least), and try to avoid them all together.

   I wish you well.

By the way, this is my first post on here so I guess I should include an introduction. My name is Gump, 40 years old, I live in Southern Indiana, 21 year CHer, married, 3 boys and a dog.

  Thanks to all for the info on this forum, and I'm sorry for my horrible writing skills, I'm just a factory worker

Link to post
Share on other sites

Hi Gump,

Welcome to the board. The better you understand your headaches and the language and numbers used to describe them, the better you'll be able to do battle against them and maybe defeat them. The ClusterBuster Files house as current and complete a collection of information and data regarding the alternative treatments of Cluster Headaches as you'll find. Familiarize yourself with them and just start reading. Begin with whatever looks most interesting. Any questions you can't find answers to on your own, please bring up at an appropriate place on the Forum. You're gonna do fine.

Ron

Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

Loading...
×
×
  • Create New...