Why can't not being in pain be a good thing?

[devonrex]

Woke up this morning, without an attack tossing me out of bed, here I sit 5 hours later a complete wreck, this feeling of impending doom, other shoe dropping, watching a car accident in slow motion feeling in waves. I should be happy, no pain, no headache. For the better part of 4 years refractory chronic, first couple had a day or two, last couple years the breaks shrank. In two years I have never, ever gone this long without one, at one level or another. Should be over the moon but I am crawling out of my skin, this is fucking insane. 

 

Has anyone else been through/like this? What kind of thing makes you dread having it so much, that when you don't you can only think 'it' must be saving up or something.,

[devonrex]

I am considering having a drink or doing some other 'trigger' simply to get it over with and yes it is that kind of insane humor thing, gallows humor. Just reading that sentence seems insane...

[devonrex]

Its the dread I think, so used to something day in day out then....nothing. ch Stockholm syndrome? So much nervous energy, just putting it out there helps a bit. Thank you for helping me find a bit of humour in it.

 

[xxx]

Sorry to sound like a stuck record...  (Hmmm I guess that phrase dates me...) but starting the anti-inflammatory regimen with the 12-Day accelerated vitamin D3 loading schedule at 50,000 IU/day vitamin D3 for 12 days followed a maintenance dose of 10,000 IU/day of vitamin D3 and the rest of this regimen has a high probability of ending your angst by preventing your CH.   The following chart illustrates the favorable response rate by day after starting the anti-inflammatory regimen for 80% of CHers who start this regimen.  This figure improves the longer CHers stay on this regimen.

That said, I frequently forget that trying to convince some CHers running from pillar to post, in and out of the frying pan and fire trying to dodge the next CH, that this is a very safe and effective method of controlling CH is like trying to herd cats.  Then I remember that logic has little meaning when the CH beast is jumping ugly every hour...  Please forgive me.   I'll be here if you need help.

V/R, Batch

 

[xBoss]

The PTSD is real with CH. 

[devonrex]

I was originally here...2-3 years ago under a login and or email I have since forgotten, I did make the redneck o2 reservoir for my concentrator, worked like a damn, have since gotten my dads o2 tank he kept in his plane and he gets it filled at a small nearby airport for me. I use the tank for horrible hits and the redneck for lower grade. I did start, try and do the d3 regimen following as it was laid out, sadly, I was one of the 20%. Sumitriptan injections work, though a few recently have been hit or miss, could be a bad injection, hit scar tissue, my thighs and stomach have seen a few by now since doing the dhe regimen (Thank god I had a canny doc here, if they prescribed an 'off' dosing from the premade syringes, like 5ml or 7 ml, I could get it compounded at a pharmacy in a nearby city for a fraction of the cost, just had to make up my own needles, otherwise I think I may have turned to mugging people in alleys once it worked the first time if I had to then try and find 3000$ a month to keep them going....)  o2 rounds off the sharp edges as do oxycocet, though at best between the two I can take a screaming ten to a pacing 9, though the magnitude between a 9 and 10 is a giant leap. Other than that, as I said in my little rambling re-intro, everything else has failed. 

Also as of this writing, still nothing, while scared shitless that the beast can somehow 'save up' energy, it has been an overall productive, if filled with nervous energy day.

[Freud]

I’m chronic too, about to give the D regimen a try. Just need to get a couple of labs. Batch is very confident in his work and rightfully so. Give him a chance to tweak it for you once you get your D lvl, Ca lvl and PTH lvl. He has fine tuned it for countless people. If they come back...  there is a chance you get a lose lose and drinking doesn’t trigger bc you’re one of the few people that get an actual remission. You can still be chronic and get no more than 3 consecutive weeks CH free. I felt similarly to you when I got my 2 month break w mm. Before I went on this crazy long half life blocking med unbeknownst to me. The first month I had a lot of days like you’re describing. Although in no way did I want to trigger them. The second month I was all smiles according to my parents. Studying for my boards getting on with my life... then I lost control of them and have to wait another 9 months to detox!  Quarterly injections come with big commitments. 

[MoxieGirl]

In a way, it's like having the flu or food poisoning. You dread having to kneel at the toilet and empty the contents of your stomach, but at least once you've done it, you know it'll be over with and you'll feel better for a few hours. 

I've been chronic 12 years now. Wow! Shocks me it's been that long sometimes. When they were bad, they were really bad, similar to the OP. I would come online and hear people chat about their cycle starting over again, and I would wonder how could anyone survive having months off, then being slammed again. At least, as a chronic, I knew a cluster was NEVER far away. I didn't have to worry that I might forget I have them and attempt to live life again. I wouldn't slip into that false sense of security to be shocked when the beast returned. 

PTSD sucks big time. Hang in there.

Mox

[devonrex]

That's exactly it Moxie, it isn't I truly want one, but I am so used to them, the dread is nearly worse than getting it done and over with and....yes in a sad way back to 'normal'. They are passing thoughts, just random ramblings mostly, I tend to record things in a stream of consciousness sort of way. While today has been better there is that nagging thought "It has had some rest, if it comes back, what kind of hell can I expect?" 

I say I have been chronic for four years, but I tend to mark the four year point as when they went from 5 at most a week to 5 a day, 20 years I have had them visiting at least a few times a week, but after weaning off topiramate they went insane. Tried going back on, did nothing. Came off because of a kidney stone, knowing then what I know now, I would pass kidney stones daily to be back down to 4-5 a week. 

36 hrs or so now and not even a twinge or shadow, my wife snaps her head to me the moment I even sniffle, so I am not the only one on edge...

Overall today has been better for the fear, but it is not gone. I also know what you mean, the devil you know vs the devil you think may be coming. Cannot decide if episodic is 'better' or not. There is a bit of comfort in the knowing they are there and not waiting to be mugged in six months. 

Anyway, ramble done. Thank you all for listening and we are all in this together no matter our distance.

[devonrex]

Good news is, I am no longer in a state of dreaded anticipation, bad news is I am no longer in a state of dreaded anticipation. Going to send sumatriptan a Christmas card though.

[Freud]

Did you get a ch?

[MoxieGirl]

Big hugs Devonrex,

I wonder if people in an abusive relationship have similar feelings. Ok, sure, maybe you're partner gets drunk and slaps you around twice a week, but maybe that becomes a security blanket, and leaving the relationship and that pattern is more scary than staying in it.

I started to write out the following in my previous post, then decided not to. But think I will. 

I Dec 2016, my best friend and housemate, the person I cared more about in this world next to my children, received a suspected diagnosis of MND (ALS/Lou Gehrig's Disease). She went through a battery of tests, and the diagnosis was confirmed in Feb 2017. Between Feb 2017 and 19 Nov 2019, when she slipped into a coma and died with me holding her hand (a week after her 47th birthday), it seemed like there was a critical event happening in our lives every 2-3 weeks. Our landlord kicking us out, trips to the hospital, her mum getting diagnosed with terminal lung cancer, debts piling up, I gave up my career and shut down my company, returned my new car and bought a junker.... The list of things we went through in those 2 years is insane. We easily ticked off the 20 top most stressful events in life, and then some. 

Something would happen, or threaten us, and we'd look at each other and wonder how we would ever get through it. Then, 2 or 3 weeks later, something so much worse would happen that the previous event would seem trivial. 

After my friend died, things got worse for a time. I had just 3 weeks to return 2 rooms of medical equipment, sort through all her stuff (which her family did most of, thankfully), sort through and pack all my stuff and downsize from a 2-bed house to a 1-bed house. We had already downsized from a large 4-bed to a very small 2-bed, so I'd been selling and binning things for nearly a year by that point. I moved into a house with no flooring and required a serious repainting of the walls. The kitchen didn't have stove, still doesn't, and only partial cupboards. Then, Christmas hit like a freight train coming out of the fog. 

This sensation you've been experiencing, the feeling of impending doom, I've been living in it from Nov 2018 till just a few weeks ago. I was constantly waiting for debt collectors to knock on my door, or for my GP to phone and say I had cancer or for the police to show up at my door. My body was so geared up for a disaster every 2-3 weeks, I didn't know how to handle life without one. I didn't know what normal was. I was constantly on edge.

When we are in an extreme situation for a long period of time, our bodies and minds adjust, and we start calling that normal. Coming down out of that is difficult. 

It then becomes a double-edged sword. You don't want the pain (returning to clusters), will do anything to get rid of the pain; but then freak when the pain is gone. 

I hope you are able to find a PF Normal. Or, perhaps, a less-pain normal. 

xx Mox

[MoxieGirl]

B,

Hugs.

Mox

[mit12]

PTSD and depression. I remember before I found this site and with the help of a few members on this site that pushed me along and I had success with busting, I used to have a small bag that I had all my rescue medicines, Zomig, PM asprin, energy drink, flexerall, Naproxin, Percodan etc. If I ever forgot my black bag I was panacked there was no way I could make it through the day. As I sit now thanks to Cluster Busters and the great people on this site I am free of depression I no longer have my black bag and best of all I want to live again! Cluster headaches are evil.