They said I was nuts

[TheMorrigan]

It was partly my fault for crying wolf.

I actually did get migraines. I've had a couple migraines per year since I can remember, which goes back to 6 years old. Why? Well that was the "other" migraine that burned a special little spot in my memory that I could never forget. 

I was 6 years old, and it's actually clear as crystal. I was eating popcorn and watching Scooby Doo. Then I was screaming at Scooby Doo and wondering if the mummy he was running from was in more pain than I was. Why was he wrapped in so many bandages? That must hurt. Maybe he knows what this is like... (I didn't really know what a mummy was.) My real mummy was freaking out and screaming at my father about what to do. Then I puked and woke up in the hospital. They called it a migraine, of course!  And I didn't have to go to school the next day. The "other migraine"

"Migraine"... I wouldn't remember it if it was a migraine.

But I did, and It got me out of many days of school, and worked for years. I used to comfort myself about the lie. Well, you really do get migraines, just not as often as you say. Take a break. Of course my parents caught on eventually. When they figured out what was fake and what was real, no more migraine days off. Mom always knew when they were real though, so I never went completely without a paddle. Until high school. I spent (altogether) months in inpatient programs because I was suicidal and injuring myself. I was supposedly exaggerating my pain because I couldn't get away with crying wolf anymore. And when it landed me in the hospital, where my parents wouldn't have to listen to or watch my "drama", I was supposedly getting what I wanted. THAT is up a creek without a paddle. It broke me and I lost all faith in humanity. I went beyond suicidal and wanted my parents dead for what they were ignoring. And when it wasn't their fault, it was my fault. It was everyone's fault. It was even the school's fault for scheduling school during spring and fall, when The Morrigan visits.

I argued with everyone that "my migraines really are this bad, something is f#&^&@% wrong". I actually thought they were migraines. So that's what I called them. They were just like the "migraine" of 1998 as far as I knew. None of this added up, and the whole situation seemed inhuman, so I didn't feel human. I tried seeking refuge in the church, but that just lead to beliefs that I was being punished, and that I was already in hell. I couldn't decide whether hell was simply a god-sent life alteration, or if I had died for being a "pathological liar" as the hospital suggested, and then resided in hell. Oh, but I just had to find out and the only way was death. So, I died. I laid down on a sidewalk, curled up in a ball, and held my breath until I saw stars. Then darkness. 

I don't know how I survived, and I don't honestly know for sure if I did. I still to this day feel like if I wanted to die that badly, to defeat my own self-preservation instincts, I should by my own laws of destiny, be dead. 

No reason to care now... I woke up, if this is real, to a doctor worked himself a 48 hour shift just to "be there" for me. He knew what was wrong with me after less than a minute of questioning.

I met The Morrigan for who she really is at that point, and we've been fighting dirtier than Game of Thrones ever since. Some times I want her to take me. Some times I'm still curious to know if I died 5 years ago, and some times I still want out. Ironically, the mental problems became real after years of treatment for them when they didn't exist. And it's probably just those psychological problems talking. The real me wants to live. The Morrigan still wants to take me, and some times I just have to write.

 

[spiny]

You are certainly welcome to write here. Hopefully it will work as therapy for you to be heard by those who understand. Being mis-diagnosed is an agony many have endured. Fortunately that aspect is getting better lately. It is heartbreaking to read what you have been through. I can understand your mental issues based on zero understanding and support.

What did your doctor put you on for your CH? Are you getting relief at least? Are you across the pond in England?

[mit12]

Over 30 years of having real bad Migraines so I thought. Went to the doc and he asked why I was sweating and looking uncomfortable? I told him I am dealing with kidney stones. He asked me how kidney stones feel compared to my headaches? I told him they are a piece of cake. That is when he started treating me for CH and it was the first relief I had. Being misdiagnosed is unfortunately common. You have found the right place, there are a lot of great people on this site that can and will help you. 

[TheMorrigan]

On 4/7/2018 at 10:06 AM, spiny said:

You are certainly welcome to write here. Hopefully it will work as therapy for you to be heard by those who understand. Being mis-diagnosed is an agony many have endured. Fortunately that aspect is getting better lately. It is heartbreaking to read what you have been through. I can understand your mental issues based on zero understanding and support.

What did your doctor put you on for your CH? Are you getting relief at least? Are you across the pond in England?

Sweet. It felt weird because I wasn't sure if it was cool, and I don't usually share writing quite like that. I was hoping it would be good to read for those that can relate.

My neurologist couldn't help me...much. Not preventive wise. Sumatriptan works wonders despite the scary cold chill down the back of my neck. (Haven't told my doctor about that, btw 0.0) I'm blessed with killer insurance here in the US, so I've had a buffet of medications to fight this. It's been interesting. Many bad reactions and many reliefs. 

Verap helped a little, if it wasn't just coincidence of a cycle ending, indomethican did nothing, Lithium carbonate prescribed by a different doctor changed my cycles for the better for some reason. I can't make sense of that lol

I rarely have a bad day lately but the reminders mess me up mentally

[TheMorrigan]

On 4/7/2018 at 2:59 PM, mit12 said:

Over 30 years of having real bad Migraines so I thought. Went to the doc and he asked why I was sweating and looking uncomfortable? I told him I am dealing with kidney stones. He asked me how kidney stones feel compared to my headaches? I told him they are a piece of cake. That is when he started treating me for CH and it was the first relief I had. Being misdiagnosed is unfortunately common. You have found the right place, there are a lot of great people on this site that can and will help you. 

Kidney stones aint no joke though... I've fortunately only had one but remember it clearly lol

probably due to too much beer, i was 21 XD

 

[CHfather]

1 hour ago, TheMorrigan said:

Sumatriptan works wonders despite the scary cold chill down the back of my neck.

Are you splitting your injections?  You can break open the autoinjector (see https://clusterbusters.org/forums/topic/2446-extending-imitrex/), and increasingly people are getting it in vials and establishing their own level.  2mg is plenty for most people (most autoinjectors have 6mg).   There is a lot of evidence that triptans make attacks worse and extend cycles.

No oxygen??????

 

[Brian]

I have also been in the special "hospitals" because of CH. I made a poem once about it. 

See their faces gather around

Cut of the shackles that hold me down

Looking at me with fear in their eyes

Knowing that I'm empty inside

I'm empty inside

I'm empty inside

And I want to die

The pain of CH is able to make even so-called normal people suicidal. So glad to hear you are finally getting treated for this disease. Good Luck!