Anxiety is crippling me :-(

[drewbie]

Hi everyone,

The regulars around here will no doubt have seen me pop up a few times recently -  thanks for being such a supportive community.

I've shared in other posts more about the specifics of my diagnosis, symptoms and history in other posts.

Truth be told, I've never come to terms with being a CHer and I've suffered pretty crippling anxiety a few times in the past during active cycles. At the moment, I've reached possibly my lowest point ever with regard to my ability to cope psychologically with the beast. It's completely broken me this time. I'm gripped by intense fear pretty much constantly. All I can see is a future full of extreme pain and suffering, where all medications fail and where I'm ultimately pushed into ending my own life to escape the pain.

I just can't escape a feeling of inevitability that I'm going to be fully chronic from here on in. I've only had a handful of full cycles in the past 12 years (partly down to the last few seemingly terminated by nerve blocks before they got going), but I fear the symptoms that persist between cycles (that my neuro has insisted are migraine) are evidence the beast never really leaves, and that I'm going to run out of luck. This current active cycle has been muted right down by a bilateral occipital nerve block, but I'm resigned to the therapeutic benefits wearing off shortly, leaving me fully exposed again. Before the nerve block, my symptoms were out of control compared with my history of CH. The pain has moved completely, from eye/temple to now being in my jaw and teeth. I don't know what this means. The frequency of attacks had gone from a usual 1-2 a day, to 5-6 a day. And worst of all, it seemed like Imitrex injections had just ceased to really work. Oxygen (15l/m, non rebreather) aborted pain, but pretty much every time I got reattacked 15-30mins later, despite staying on oxygen for a while after the pain had gone. This time the nerve block hasn't terminated the cycle, I continue to get mild attacks.

My escape hatch abortives failing makes me feel like I'm staring at a future against the beast with no plan B. This is setting off a truly exquisite level of fear/anxiety which I just can't cope with. I've always taken some comfort in believing triptans and oxygen would save me. To feel that comfort blanket might have been removed is just an unbearable reality to contemplate.

I've been on the D3 regimen now for just over a week, and started a ketogenic diet 4 days ago. I have no idea if the nerve block continues to work and/or these other measures are helping to keep things at bay. 

I guess I just want some encouragement that my worst fears might be overblown, that there's still hope for me, that I will find a way to cope. I feel like I'm going to be a lost cause with that just culminating in me being forced into suicide. It's a bleak place to be mentally. Last year I cycled 7000km on my bike, I was the picture of health/strength. Now I just feel physically and mentally broken - a shadow of my former self.

How do the rest of you cope with the anxiety/fear? Are there some tried and tested techniques that I can utilise to help me fight back against the hugely imposing threat of this menacing disease? Right now I see no hope, no chance of future happiness. My two young kids need a good dad to make their lives happy and I fear that won't be possible because of me. It breaks my heart that my own misfortune will damage their lives too.

Sorry to download like this. I'm just desperate to find some hope to cling onto. Anything at all.

I'm seeing my neurologist on Tuesday. I'm just praying there is something I can do to help me control this beast long term. The uncertainty this disease creates really is like nothing else.

[Jteira]

I can relate to that hopeless feeling about the future, and I know what it’s like to feel like the rest of your life is just a juicy delicious looking meal that has now been poisoned and can no longer be enjoyed. I don’t have kids to worry about disappointing, but I did feel at some points that my close family and friends didn’t know that I was already dead, but just pretending until formal arrangements could be made.

Busting changed all of this for me. And by busting, I don’t mean “I tried a couple 1.5 gram doses” to see how I felt. This is a lifestyle for me now, just like monitoring blood sugar and keeping insulin around is a lifestyle for diabetics. I plan and schedule around it, and it keeps me happy, healthy, and functioning.

I have hemicrania continua, FYI. 
 

I think the healthy way to approach busting is to approach it as a tool you need to practice to learn to use properly.

There is a clinical study in progress right now on the efficacy of psilocybin on cluster headache, so your concerns about it exacerbating it in the long run are probably unfounded. But if you are waiting for multiple peer reviewed studies that answer your exact questions, then you will probably be waiting a long time. Probably longer than any of us will be around, and I personally preferred to “carpe diem”. Because science will trudge on at its own pace, but we only get one chance at this life.

All research I have found related to the physical effects of psilocybin use are positive. It has a very powerful anti inflammatory effect through its action on serotonin receptors. 
 

Is it an easy medication to manage? No. One Saturday out of the month, I spend a day relaxing at home, crazy as a loon. I stare at swirly colors on my VR screen and meditate and listen to music. Things get weird. Then it all goes back to normal and I go back to my life. But I can’t minimize the fact that these feelings can be panic inducing if someone is unprepared or in a stressful setting. Sometimes it’s really irritating to have to plan out “not being able to think or be rational” for a whole afternoon and it makes scheduling tough. But the headache always creeps back if I neglect to keep up with my dosing schedule.

I don’t want to give you false hope by just saying “Try busting, it’s a miracle “. Because busting comes with it’s own difficulties and challenges, and it’s not an easy route either. But it did end up making my life worth keeping.

[CHfather]

26 minutes ago, Jteira said:

I have hemicrania continua, FYI. 

That's a lovely message you wrote, Jt', as your posts so often are.

I don't want to hijack this important thread, but I am interested in the sentence I quoted for a few reasons. 

First, in reading in drewbies' post about the "the symptoms that persist between cycles (that my neuro has insisted are migraine)," and the shortcomings of O2 and triptans, and the many daily attacks, and the efficacy of the nerve blocks (which are often effective for HC), I couldn't help thinking of the possibility that drewbie might have HC or some variation of it. 

Beyond that, I'm interested in what you said for purposes of increasing my understanding related to HC.  I can recall a few people who came here thinking they had CH but later turned out to have HC.  The pattern was the same -- busting helped them for maybe a day or two but not longer.  I now have to revise my understanding of this.  Maybe it's the depth and regularity of your busting that made the difference, or maybe there was just something else going on that shouldn't have led me to generalize about HC and busting in the first place.

So, three questions:

Did busting work well for you from the beginning, or was it just your commitment to make it a way of life that turned things around?

Did you use Indomethacin at some point to treat your HC?

Are you doing any other major things in addition to busting--D3 regimen, for example?

Thank you.

 

  

Edited January 30, 2021 by CHfather

[Jteira]

I have had several conversations with clusterheads and with my neuro (Dr. Burish) about the parallels between the pain often referred to as “shadows” and the HC experience. 
 

I am resistant to NSAIDS and most pain meds. Indomethacin never really helped me, leaving HC out formally as a diagnosis. But as Dr. Burish told me “these titles are just arbitrarily decided by some guys in a room”, so whether you want to call it hemicrania continua or NDPH that is presenting identical to hemicrania continua, it is what it is. I don’t respond to indomethacin, I probably don’t even process it because it doesn’t even upset my stomach at the ridiculously high HC doses.

I didn’t approach busting the way that seems to be normal for a lot of the episodic CH people. I started at a very high dose, and that day was the first pain free time I had (not sleeping) in a year. Sure, I was off my rocker that whole day, and the headache came right back after, but the headache did start to fade and break up after the third dose about 20 days later.

The D3 regimen was suggested to me.  Buy honestly, I’m pretty comfortable now so I haven’t been motivated to really remember to take pills at that frequency. Maybe I’m holding back on that one until the other shoe drops.

I think you could probably generalize us in the same category as a the CCH busting experience. Little doses don’t work, and nothing ever works for long and therefore requires frequent dosing. We are just 100% shadows, and they get the serious attacks that we don’t. I actually never had what I could describe as an “attack”. It was always constant, and if it increased or decreased in intensity, it was a slow incremental march throughout the day.

[CHfather]

6 hours ago, drewbie said:

My escape hatch abortives failing makes me feel like I'm staring at a future against the beast with no plan B.

drewbie, I haven't read your whole history, so maybe I'm mentioning things that you have already addressed, but there's a lot of stuff out there that could be part of a plan B that becomes part of Plan A. I feel hopeful that the D3 regimen is likely to make a big difference for you. A week is way too soon to tell about that, but it could be what is at least reducing your symptoms now. I think Batch (xxx) would suggest that at a time like now when your symptoms have ramped up, you ought to also be taking Benadryl or Quercetin. Jteira has mentioned busting. A person might even be able to do that without the regular tripping by using seeds. 

Pharmaceutically, there are all the new CGRP-related medications, both preventive (for example, Emgality) and abortive (for example, Ubrelvy).  The medication Octreotide can work as an abortive when triptans don't, and so can DHE (dihydroergotamine).  You might have tried Verapamil as a preventive, but even if you did, you might not have reached a high enough level for it to be effective (most doctors don't prescribe the levels that some people with CH need).  Lithium is often quite effective as a preventive, and there are other things that work for some people, such as gabapentin and topirimate.  Indomethacin actually helps some people with CH, and for reasons I mentioned in my post to Jteira, it might be worth giving that a shot.  For some people, ketamine has been a very effective preventive.

I understand that saying there are a lot of possible treatments and "all you have to do" is keep trying them is maybe not very heartening. There is likely to be some disappointment associated with that search, and some expense, and in some cases some side effects that you might not want. But you plainly have strong reasons to keep trying, and I'm just saying that there are things that could be tried.

Edited January 30, 2021 by CHfather

[drewbie]

Thank you both for your replies, it really does mean a lot to have such a supportive community to offer help and advice.

To be honest, I've tried very little in some regard. I haven't really needed to go crazy with meds as my cycles of severe CH attacks have been few and far between.

2009 was first (diagnosed with eCH once cycle was basically over - lasted 4 weeks). 2016 had another cycle, 3 weeks long, with quite a few weeks of lingering pain/discomfort (shadows?). Since then, any sign of a full blown cycle, I've managed to get a nerve block within 2/3 days of suspecting it, and it's fizzled out quickly. Looking back, between 2009 and 2016, I did have varying symptoms and episodes that weren't really like the classic CH I'd presented with in 2009. I did consult more than one neuro during that time and those symptoms were always classified as migraine (i had migraine from a very young age).

Took my first triptan for migraine in 2016 and was blown away how well it worked, proper miracle. But have been suspicious ever since that my discovery of triptans was followed a few months later by my second definitive CH cycle. Towards the end of that 3 week 2016 CH cycle, I was prescribed oxygen and it seemed to work well. Red Bull was also pretty reliable as it had been in 2009. I got hold of Imitrex injections (my sumatriptan usage for migraine was always tablet) too but actually didn't get round to using one specifically for a textbook CH attack as the cycle faded soon after, and the O2 was both working and seemed generally preferable given it being natural.

Since that CH bout in 2016 though, I was experiencing a worsening of my "migraine" symptoms. 95% of the time hitting my left hand side, whereas my textbook cluster cycles have always been right sided. My neurologist settled on a diagnosis of chronic migraine and eCH. I tried various things for my chronic headaches - Botox, Aimovig, keto diet. I had a different neurologist suggest HC and I tried indomethacin, but didn't experience any obvious benefit. Eventually I found the best control with melatonin and candesartan. This got things under control to the extent that my pain levels were manageable 90% of the time, with only the odd more severe headache needing a triptan dose. And the preventive meds meant any severe headache would normally require a very distinct trigger (e.g. prolonged exertion). Not once can I recall a triptan failing to treat one of those headaches, so I had built up considerable confidence in my treatment protocol. The only caveat really being that my residual lower grade chronic pain has generally not been particularly responsive to triptans).

Then just under 4 weeks ago I felt the telltale signs of a CH cycle. Literally to the day it coincided with the same thing last year. Difference is, last year I got the nerve block 3 days after suspecting it. This year, the pandemic scuppered things and it was 7 days. And it was during those additional 4 days that things kicked off big. It just seemed crazy compared with my prior CH experiences. The most worrying thing being the limited effectiveness of the Imitrex injections (which, by the way, have always been rapidly effective for my severe migraines, just like tablets have been), and the oxygen reattacks (very quick to abort but then recurrence of attack very soon after). Once I'd had the nerve block, though, there was an almost immediate rapid improvement. Since then (2.5 weeks), I've not really needed to use abortives other then energy shots.

My fear stems from a belief that my chronic milder headaches are all actually CH (chronic shadows?). And, assuming that to be the case, would make me one biological flick of a switch away from full blown cCH. And that's what I fear right now is happening. I'm resigned to a belief that this current cycle will never end, that this is the new normal. I've convinced myself that my baseline has now changed.

That's the crux of my situation. Sorry to dump it all out here. It's somehow cathartic just to share it, irrespective of whether anyone actually replies!

[drewbie]

p.s. I'm in the UK and frankly wouldn't know where to begin in getting hold of something like RC seeds. I've looked it up and it's certainly not obvious, and I wouldn't know how to trust any potential source anyway.

[ruthlian]

I don't have a lot of answers, but I do have a 4 year old daughter and I totally understand that feeling of not being enough of yourself to be a good parent. I had a CH attack come on while setting up to make slime with her and it broke my heart to send her to go watch tv instead while I endured...it felt like I was literally watching my life be stolen from me. 

I bought RC seeds on tranceplants.net a couple weeks ago - they haven't shipped yet it looks like but it wasn't very expensive so I felt ok about it as an experiment.

[Bejeeber]

Drewbie, I'm going to guess here that you are actually NOT "one biological flick of a switch away from full blown cCH", but of course I realize strong anxiety can make it convincingly feel like you are.

Besides encouraging you to continue to rigorously adhere to the D3 regimen, I'll just repeat what I've reported in other threads in this forum, even though busting may not be advisable, and could present sourcing challenges for you: I found busting not only helped quash some entire CH cycles for me, but it long term quashed my CH related PTSD-like symptoms (basically anxiety/fear/dread). Ironically during some of my busting sessions, I experienced very heightened anxiety, so I now advocate a diazepam type tranquilizer while busting for anyone prone to anxiety (but not such medication for daily non-busting induced anxiety).

And for a good while now there have been the reports like this about how A single dose of the psychedelic compound found in so-called magic mushrooms has eased anxiety and depression for a group of cancer patients for more than four years. Not that we are cancer patients.

You mentioned how exceptionally physically active and fit you were prior to this difficult bout - since exercise is also really supposed to be good for relieving anxiety, I hope you can find a way to get back to it soon and start enjoying its benefits again.

FWIW there's also this bit I found interesting about a new testosterone spray to treat anxiety disorders.

All this said, if I was facing an unrelenting bout with imitrex effectiveness waning, I'd have to assume I'd find myself right back in the heavy dread zone.

Sorry to hear your nerve block was delayed this time around, with things going full blown while waiting, but glad to hear that at least the nerve block has had some real effectiveness.

 

 

[drewbie]

Thank you all for your kind support and advice.

Anxiety is a rocky ride with good days and dreadful days. Yesterday was not a good day for me. 

Just got to keep fighting. We're all fighting something. 

[devonrex]

I see a lot of good advice for treatments. Might I suggest a guided meditation app like headspace? While it does not do much for the pain and attacks, I have found it extremely useful in between attacks to calm the anxiety, the other shoe going to drop feel, the fear that we have all likely experienced waiting on the next.

[spiny]

Perhaps a silly question, but has your Neuro mentioned Trigeminal Neuralgia to you? I ask because you state that the pain has moved to the jaw and teeth. Well, that nerve serves all the nerves on one side of your face. From your forehead to your jaw. Specific nerve blocks work very well to treat it. The first time I had it, a Pred dose pack killed it for me. Just an idea I had. At any rate, it hurts like a witch too. I could not put my teeth together or touch my face when lying down. I spent a lot of time over a wood burner savoring the heat on my face and slept on the sofa.

How are you doing now? Any better? Update?

[drewbie]

Hi everyone. Thanks for checking up on me @spiny, that's really kind.

Latest update is that I'm fortunately feeling quite improved on the mental side. I don't feel like I'm living out a 24/7 panic attack! 

I think I found a reason for why I hit a really low point anxiety wise. I think I mentioned I've started up the ketogenic diet? That was mid last week, and, with the benefit of hindsight, I realise I was being clobbered pretty hard by "keto flu" on Friday and Saturday especially. At the time I'd put the way I felt physically and mentally down to anxiety. However, the fog seemed to little suddenly on Sunday and I've just felt much more chilled since - my mind's ability to catastrophise has noticeably mellowed. It's certainly not unknown for the keto adaptation process to press hard on mental health buttons.

I have an appointment with my neurologist today to discuss where things are at. My CH symptoms remain fairly muted but it's obviously difficult to know whether that's because I'm reaching the end of the cycle or whether the interventions I'm making (d3 regimen, keto, melatonin, nerve block) are keeping it at bay. In a perverse way, I sort of see the benefit of having not used any preventative treatments in my first two cycles (2009, 2016) because at least I could follow the natural course of each cycle! As things currently stand, it's just really hard to know, although there is some sense building in my mind that MAYBE the beast is retreating. It's 4 weeks since this ramped up and that's historically been a rough indicator of cycle length, at least the length of period during which I'd experience full attacks.

@spiny i was thinking of mentioning TGN to my neurologist. The reason being that I noticed at the beginning of this cycle that the attacks of pain could be triggered by eating - I could almost instantaneously trigger it by something cold striking my lower teeth (on the right hand side). I just think the length of time the pain lasts is not indicative of TGN. I have been massively conscious the last 4 weeks to avoid chewing any food using my right hand side teeth.

[spiny]

That is soo relatable Drewbie. When I had an attack of TN, it was like my bottom teeth were humped up where they should have been the valleys for the cusps from above. Sleeping on my back on the sofa kept them slightly ajar so that they did not touch and set off the pain. Nor could I roll my head to the side to cause pressure from with out. 

The eating being a 'trigger'is classic for TN, as you likely have found out by now! Or brushing your teeth, etc. There are different levels of pain with it too. 

I had to look up Keto Flu!  I agree with your analysis there too! My husband has begun Keto this winter and it does require some adjustment from your body. He too, exhibited symptoms of the mental stress for a while. I am so happy that you are in a much better place mentally!! It does weigh on your mind in oh so many ways. 

Please let us know how the visit goes today! 

ATB!!!

[meadlobon]

Last year my father became depressed because of lengthened isolation. I'll share our story with you. When the isolation began, we didn't think it'd last so long. We had savings and decided to take it as a bit of vacation. But after two weeks, we began to notice that my father was distraught, spending all his time watching YouTube and various TV shows and drinking. When we started getting a case of beer delivered home almost every day, we recognize addiction and depression. My mother took my father to a family psychologist as soon as possible, but so far, the treatment is complex. He started skipping work sometimes and drinking a lot.