Describing CH to non-believers

[Into Light]

9 hours ago, Freud said:

I’m with you on that one, broken bones don’t even compare. This ch shit is downright wicked. 

“Nothing Compares with You”

[CHfather]

FWIW, that recent big study of people with CH (more than 2500 respondents) asked people to rate the pain of conditions they had experienced. I can only paste in the data here. Column 1 is the "minimum" rating on a 1-10 scale (not sure what that really means here), 2 is the maximum, 3 is the average.  I think one reason I can relate a little to the CH experience is that I had pancreatitis (second-highest average rating after CH; ahead of childbirth) of unknown origin for several years (one long bout and then frequent shorter ones).  It was agonizing, and no doctor could figure out what was causing it or what to do about it.  Finally I correctly self-diagnosed the cause: MSG!  So, some similarities as I say to the CH experience, but still nothing like the pain level.  (This self-diagnosis (which was accurate) is one reason why I'm adamant about asking people whether MSG might be some kind of trigger for their CH attacks, and why I compiled the "triggers" doc in the CB Files.)

Cluster Headache attacks	0.00	10.00	9.58
Child birth	0.00	10.00	7.21
Migraine	0.00	10.00	5.61
Shingles	0.00	9.40	4.59
Broken Bones	0.00	10.00	5.23
Heart Attack	0.90	10.00	5.07
Herniated Disk (i.e. slipped disk)	0.00	10.00	6.16
Arthritis	0.00	10.00	4.04
Sciatica	0.00	10.00	5.10
Kidney Stones	0.00	10.00	6.87
Gall Stones	0.00	10.00	6.30
Pancreatitis	4.00	10.00	7.45
Fibromyalgia	0.00	10.00	5.64
Spinal Tap	0.00	10.00	4.61
Gunshot wound	1.00	9.00	5.89
Stab wound	0.00	9.00	4.59
Biopsy (Kidney, Spleen, Liver, Bone Marrow or other major organ)	0.10	10.00	4.67

 

[CHfather]

FWIW, some years ago I put together these docs for CB for the purpose of sharing with family, co-workers, etc.  A lot of tears while creating the first one.

Living with CH - 8.5x11 - 9-15-14.docx

20 Facts brochure 8-24-13.docx

Edited May 4, 2019 by CHfather

[Into Light]

On 5/4/2019 at 2:10 AM, Freud said:

I’m with you on that one, broken bones don’t even compare. This ch shit is downright wicked. 

Ya Think?

 

[Freud]

So I’ve broken both heads off of my radius and ulna, had an s fracture with displacement very close to a compound fracture. I drive home from the skate park woke up my parents and said “I think it’s broken.”  My father was like “are you an idiot, it’s broken”. In my late 20s I broke a bone in my wrist and dislocated my elbow (that hurt, especially when I put it back in place but still not as bad as a kip 2-3). The only pain that I have experienced that registered any where close to a kip 7-10 was when I was burned (22% face, neck, chest, and shoulders). I spent 2-3months in the Burn ICU where daily they take your bandages off in a special room and peal/pick at the dead tissue until they get to the healthy stuff. They load you up with IV morphine and valume, which does nothing as soon as they start to take off the bandages. You hear people screaming bloody murder all morning long as each pt in the unit gets their turn. I would pray for god to take me in my sleep. Never happened...  The funny thing is my CHs are more painful and I have never prayed/wished to die like that. I’ve thought if my POS shit car falls apart while I’m doing 90to get home to my oxygen if I don’t have a tank with me it would be a blessing. But that’s as close as I’ve gotten in my negative thoughts. I’ve told that to my psych and he says that’s perfectly normal. I’ve also had a thoracotomy (incision between the ribs for lung surgery) which is supposed to be the most painful incision in surgery and although it hurt real bad it’s nothing compared to CH. All in all I’ve had a lot of “painful shit” and nothing compares to a kip7-10. We truly won the lottery with this crap. 

[MoxieGirl]

Freud,

OMG Dude! You have really put your body through its paces. 

xx Mox

[FunTimes]

Freud

 

Sounds like you had a lot of fun growing up so far. Skate park, fire and broken bones.. We should hang out one weekend!

All kidding aside. Hope things get better for you soon. I may reach out to you over the weekend. 

 

[Freud]

Sounds good FT, I’ve had a lot of prep to deal with this CCH. 25-30 surgeries since 14 (I’m 40now). It has truly made me the man I am. And a great physician assistant. I could do without the adult onset Bipolar and the ptsd that came from the few years I was manic and in denial making horrible decisions as well as the CCH the last 18 months.  But I’m glad I got it and not my sister or parents.  They for sure couldn’t handle it. You are an inspiration to me, I’m still hopeful I’ll get it under control with psychedelics in 8 months when I’m finally detoxed but if I can’t were in this together either way!  For 15 years I did pediatric and adult heart surgery, I thought I’d finish my career doing that, it defined me to the core but now I’d be more than happy doing a mindles speciality like dermatology. Great pay no call no more 60-80hr weeks sleeping in the hospital killing my neck and back doing 8-15hr surgeries. I’m ready for what they call a OMGWTFBBQ job. Copy that into google. Lol. Looking forward to it FT. The market I was talking about is the reading terminal market...

[Pcaola]

Thanks to all for great stuff to read.  I share in all the frustrations. There is just NO WAY someone else will understand.  Not just the pain level of CHs but the overall life disruption, wearing down, and eventually feeling just done.    Nobody should have this much anxiety about going to BED.  It’s 110% against the body’s natural instinct.  To relax, unwind and recharge.  To be in week 4 of a 12-15 week cycle.  And just know, outright KNOW, that 45-90 minutes after I go to bed that I will wake up and have to fight the fight.  In the past,  the fight would wear me out and the Triptans would leave me like mush so I’d usually sleep till morning.   But every cycle is different ! We know this.  For me and those that just can’t catch a break. It’s like a “rinse and repeat” cycle at night.  And to get up and go do my 12 hour shift as an EMT in a city?   Yup, still getting it done but I can feel it wearing me down.    Never getting more than 2-3 hours sleep in a row if lucky.    

I’ll  be glad when they (hopefully) change the name from cluster headaches overall.   Because a headache it is not.  There is a difference between an asthma attack or bronchitis and having COPD or Emphysema so I’m sure it would be insulting to tell someone who suffers from COPD and CHF that I too have asthma 

Beyond the “pain” and the fight.   Only the closest of family will even get a glimpse of what this does to us OVERALL.  The depression, anxiety and pure exhaustion that comes with it.   

I was at work yesterday when I read through the thread and saw the post about Dans video ? I believe. So curious me just hops on you tube and finds it ( and plenty others).  30 seconds into the video I absolutely lost it ...at work.   Thank goodness I was by myself on the picnic table for a few.  For whatever reason, I rarely show any major emotion, but mid day, at work I completely LOST it and could not stop crying because I KNOW,  I was THERE less than 7 hours ago, on my own couch.  I haven’t slept in my bed in 4 weeks.  I just refuse to sleep laying flat.  I feel like it makes mine worse or it harder to wake up and fight the fight. But yesterday gave me my own glimpse into “how I really am doing “

I apologize for the long rant.   I was just trying to express ,as others did, besides the “PAIN”, how the horrid condition is so life disruptive, mentally and emotionally exhausting and really can just wear us down to almost nothing.

Paul

CH diagnosed ( pretty much on my own, then found the right Neuro Doc ) 2010

[Freud]

@Pcaola besides being a place to learn and share about busting, this is a place to come when you feel low or desperate. This site has given me inspiration. Just knowing others have made it through decades of CH and how much psychedelics can help. Plus I have found in life there is always some one that has it worse than me and I have learned so much from them.  Don’t ever apologize for venting/ sharing your story here. We have almost all been there. 

[Pcaola]

Thanks Freud.  Even yeas into this, I find my emotional level just .... a mess this round.   I do have friends trying to understand.  My older boys have watched me do the “kicking dance with my head in between the back cushions”, trying to not upset them.  Luckily they are older teens now and understand.  

But you are right. Just in watching some other videos and reading. I see and hear people who do have it even much worse than I.  Thanks for reminding me of that too.  

I am sure I will be around a lot more often. And need to remind myself to do so.  Both when in and out of cycle.  

Paul. 

[Freud]

Thanks for sharing Paul, when I watched my first couple of people getting an attack I said to my mother (I currently live with my parents) is that what I look like?  I don’t look that bad. And much to my surprise she said it’s just as bad in a different kind of horrific way. She in particular worries about the pain I have to endure. It doesn’t matter how much I tell her I will never be suicidal she just worries about it. I see a psychologist on a regular basis, once a month to every week depending on how I’m feeling. Honestly since I’ve been dosing with mm (magic mushrooms) for over a year now I will only get a hint of depression here and there. I also think it helps with the hopeless feelings as I rarely get those thoughts either. Despite knowing my options for treatment are very limited. As for the emotional part I hadn’t been able to cry for over a year until a couple of weeks ago (I’m 18months since my first CH and I’m chronic). Then my mother told me about how her dentist asked how I was and she told him I was battling CCH he winced and said “he’s been through so much, I’m so sorry...” and I immediately started balling. Since then I’ve been fairly emotional at times and I try not to break down in front of my parents too much.

When I look back at how much pain I’ve endured since I was 14 (I’m 40 now) it seems  Unhuman. From serious third and second degree burns, bulging cervical discs, burn scars crushing my spine, the list goes on all in all 25 plus surgeries since 14y/o. But all that pain has prepared me to deal with the CCH (the worst pain of them all). Take a look at my post history to see more, I’ve rambled enough. Plus I have mad a few threads about mm cultivation with links. There are several ways to cultivate. Another option that may be better for you since your cycle has already started is to try LSA contains seeds. Click on the new members button at the top of the page there is a link to more info. 

[Pcaola]

Thanks Freud. It was reading some of your posts that reminded me that I do not have it as bad as others.   I honestly don’t know where I would be with no oxygen right now and at least knowing. I probably will break the cycle sooner or later.   Since my last cycle 2.5 years ago , I see some improvements and research finally being done in CH.  but even remember reading back then, that shrooms were becoming a go to option for many.  I have been on the Vit D. And going to start the K,Magnesium and Fish Oil tomorrow and probably will see a new headache Nero tomorrow, mine seems to have disappeared.  ( wasn’t great anyways ).  I’ve been reading and will keep reading. I’ll check the link you suggested.  I worry a little about the mushrooms due to Job issue.  Nothing I’d want to try and explain on a pee test as an EMT in Atlantic City NJ.   BUT bonus for unlimited O2 supply !  

Wish me a little luck to find a somewhat educated doctor tomorrow. I’ll be in touch.  

You are a survivor x5 man.  Whew 

[Freud]

Your best bet is to call the Jefferson headache center in Philly. I travel up to CT to see my doc. I pay out of pocket bc I don’t have out of network benifits any more. I am going to call Jeff tomorrow and see if they take my insurance. If so I will make an appointment with ***Dr Young. Another CH friend of mine recommends him. He is the director of the program, up to date on everything, a big CH advocate, a supporter of clusterbusters and busting. So you can and should speak freely about it. Going to a headache center makes all the difference. I wasted 6 months with my local headache specialist. At Jefferson if you call and say you have cluster headaches and need to get in. I hear they find a way. That’s the same way my headache center is. They may not do it for new patients but certinately for known Pts. 

As for the drug testing it’s really nothing to worry about. Psychedelics are metabolized and excreted very fast. For example, psilocybin and Psilocin the two active alkaloids in mm they would test for, clear your systems in less than 30hrs and 5 hrs respectively. So unless you dosed, went to work the next day and had an incident warranting a drug test you will be fine. Even then it is a special order assay and is rarely done. If I was you I’d dose when you had at least the next day off if not two. I am a PA and when I go back to work (when I get my CH under control) I’m not sure what I’m going to say when docs or people ask me how I treat them. I may just say alternative medicine or I may just tell the truth. I know of two people on here that work for the GOV or department of corrections, people with friends that are police, judges. All their bosses they have told have been supportive and encouraged them to try what ever they had to. One of the CHers did experimental brain surgery before trying mm because he was so anti drugs and didn’t understand psychedelics. I wouldn’t tell an employer I used LSD but I’d be more inclined to talk about the mm if I was pressed about what kind of alternative medicine I used. You have to judge your bosses. Have they ever witnessed an attack. Do they know how much you suffer?  When I told my parents I remembered seeing a 60 minutes piece on CH and MM some where around 2010-2015 despite being anti hallucinogens from all the misinformation out there, they said do it. What ever it takes, but they see me every day in agony. The CHers I mentioned that had the support of their bosses and friends had all witnessed bad attacks. I’m mid hit and having trouble focusing so I’ll cut it there. Food for thought...

 

brian

***i have to verify that this is the correct dr my friend recommended. I’ll post what he tells me ASAP. I thought he said young was the director but he’s not. I think I mixed up his old doc there with the new doc he’s going to see in the future. 

Edited May 17, 2019 by Freud

[MoxieGirl]

Hi Paul,

Welcome to the forum, sorry you have to be here.

Looks like you're getting good advice from Freud. He's a good man, and a good friend, with lots of experience on these matters. 

I've been on CH forums since mine started in 2007, and every so often the conversation of the name 'cluster headaches' comes up, and I don't know of any sufferer who agrees the name is apt. You're right, they aren't on the same scale as a headache, not even in the same universe. And, not everyone (like Freud and myself) have them in clusters. I've been chronic since they started in 2007, although thankfully, shrooms have allowed me to bring them under control and they no longer disrupt my life. Personally, I call them 'cluster attacks', because that's what they are, and attack. 

I think one of the greatest powers of this forum, and others like it, is to let people know they aren't alone. The pain, fear and frustration you feel is felt by others, and we do get it. And, even more so, there is hope. There are things that work, even if they aren't doctor approved. It is possible to get on top of this beast and get your life back. Not always easy, but possible.

Mox

[Pcaola]

Freud.  

Just fast thoughts for the morning.  Still going to try and get my apt today at

the neurology/headache  center.  I have my list of questions for the doc to see if we are even remotely on the right path and how many CH patients she may be treating, methods, etc. 

The Jefferson Headache center across the bridge in Phila was one of my first choices.  And luckily a VERY good friend works in the Jefferson system and can get me an escalated appointment.  Not same day but probably not 5 month wait.  But in all my reading about that center, I couldn’t find a specific CH positive review.  But Tons of negative reviews that they really push their “in patient” 5 -7 day treatment.  I was all excited for Jefferson Heacache center till I did my reading. I feel like we have hijacked the threads purpose now. I’ll start my own or pick one to jump one next. Thanks all 

[xxx]

Hey Paul,

When you see the doctors today, ask for the lab test of your serum 25(OH)D.  25 Hydroxy-Vitamin D is the first metabolite of vitamin D3 that's used to measure its status...  It's axiomatic if you're having an active bout of CH...  you're vitamin D3 deficient as illustrated in the following graphic from the online survey of 257 CHers.  This chart illustrates the normal distribution of lab results for 25(OH)D before starting the vitamin D3 regimen. 

The normal reference range for this lab test is 30 to 100 ng/mL. Any value less than 30 is insufficient/deficient.  80% of CHers who start this regimen respond with an 80% reduction in the frequency of their CH when their 25(OH)D serum concentration reaches 80 ng/mL.  50% of CHers who start this regimen experience a complete cessation of CH symptoms in the first 30 days after starting this regimen.

If they're hesitant or unwilling to give you this lab test, just tell them you've been taking vitamin D3 at 50,000 IU/day then watch their faces.

Take care and please keep us posted

V/R, Batch

Edited May 17, 2019 by Batch

[FunTimes]

Pcaola

I have not gone to Jefferson for a normal doctor visit but I did a clinical trial there and everyone I dealt with seemed to know what they were talking about and doing. I dont know if they are the same people you will be seeing but everyone I had a visit with seemed to know what cluster headaches were and understood the pain clusters cause. This does not say much about how they will treat your condition but I think you are in a good place for starts. I also started out seeing a doctor at Penn, I no longer see him. 

[Pcaola]

Thank you Fun Times.  And others for steering me towards Penn,  this cycle is soo all over the place.   I just don’t know what to do.  Between it “hopefully” coming up on the last 4 weeks of the cycle.  Costs with a deductible based health insurance that changes June 1, and a possible wait list.  Just have that “can’t win feeling”.  But do know I’m going to need a good neuro for future , no matter what. 

BUT...on the topic of .. how do you describe CHs to non believers, co workers, other people.  I recently switched careers and am working in a new place, new people, but all fellow EMTs who understand the Kip scale, migraines, etc and still only 1 has heard of  Trigeminal Neuralgia ( because of a friend ).  

I decided (personally) I don’t like sounding like a whiner or a cry baby, even though “I” know there’s nothing “baby” about this. So when someone at work asks if I’m okay, or what’s up with me when my left eye is half closed or when I’m just beyond exhausted from no sleep.   I ask them, can I text you a web link ?   And I ask them for 5 minutes...  just give me 5 minutes of your time, to read what I send you.  

USUALLY, about 10 minutes later, I get a genuine “Paul,  my God....that’s horrible”.    I feel like they at least got something, not from my mouth, but something they read and seems more real I guess.   I keep 2 website pages saved on my phone browser for this.   One is the clusterbuster explanation and another is from the Atlantic Magazine published in 2013 actually,  but I liked the IMPACT of it.  

So far, the key has been just getting someone to give you the FIVE minutes.   Some read 20 seconds and assume the rest LOL.   Nothing I can do there. Does kinda do to show you sometimes.... who thinks you’re worth 5 minutes .

Paul

 

[MoxieGirl]

Paul,

That is a GENIUS idea. Do you mind sharing the links with us that you use? 

This is a pretty good description, although light on the pain element: OUCH Uk - What is a Cluster Headache

Mox