Clusterheadaches.com Message Board


    
      
        Clusterheadaches.com Message Board
        (http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi)
      

        Cluster Headache Help and Support >> Cluster Headache Specific >> Public attacks and other humiliating things.
        
(Message started by: Miz_D on Oct 2^nd, 2007, 3:17am)

Title: Public attacks and other humiliating things.
Post by Miz_D on Oct 2^nd, 2007, 3:17am

So much is going on with me around my CH I just have to vent it here to people who understand. I'd apologize if it offends anyone but I am SO sick of apologizing for anything to do with my 'condition' including having it in the first place, not being able to control my reactions when hit, not responding to meds the way I'm expected to, etc.

I'm having a crazy time right now, I get hit within 2 hours every time I take my Verapamil. I am trying to taper slowly as suggested and am down from 1080 mg to 720 mg. I understand the risks of not tapering and accept that for right now, I will just have to deal with getting hit several times per day. Ok, I can do that...I've done it before. I am Sheena of the jungle or some other superfreak. I don't like it of course, but I can do it...Grrrrr!

I've just relocated to a small town in which the Doctor thinks CH's should be treated like Migraines and that even though it has been ME living with CH for the past 8 years, I couldn't possibly know what does or does not work for me. I brought some Imitrex Inj with me from Canada but it's almost all gone. I have one shot left that I'm saving for that super-special hit. In the meantime, I'm taking this stupid Maxalt that isn't working for me...at best, it brings a 9-10 down to a 7-8. Yippee.

My bitch is this: I can handle the suffering when its necessary but I can't handle having to suffer when its caused by someone's ego or imcompetence. When I tell a Doctor all the meds I have taken and how they did or didn't work for me, I expect them to respect what I am saying and believe me! I expect that when I see 1 Doctor more than a few times (so regularly in my books) and I've told them from the outset that I have Chronic CH, they actually have some empathy and ask me what I need rather than making me beg for it. I expect that when I go 2 days in a row to refill a headache medication I am not continuously lectured about why I shouldn't 'need' another refill so soon after my last one!

I would hope that when I just happen to get hit while sitting in a Doctor's office while waiting for my appointment that the nurse shows a little compassion for someone who is obviously in pain (rocking, tears running down the face, massaging above the left eye, etc.) instead of rolling her eyes when I try to explain that I am suffering from head pain more intense than a Migraine and that if she would just give me a minute I'll be able to fulfill her request and get up on the scale so she can weigh me.

And to the woman who came to me and suggested that I should remove myself from the waiting room because I might be traumatizing the children...well, I can't even go there right now....at least I didn't get robbed like I did once when I got hit at a bus stop in a not-so-friendly neighbourhood back home. Wonder if the Imitrex left in my purse that they grabbed fetched a nice price on the black market...

What I did achive today was an order of Imitrex Injection refills that I will hopefully be able to pick up tomorrow...a referal to a neurologist...and a script for oxygen which hasn't traditionally been too successful for me but who knows? Maybe it'll be different this time...:P

Thank you for being here, thank you for listening...I'm really a nice person just a little fed-up at the moment ;;D

Title: Re: Public attacks and other humiliating things.
Post by Lonnie on Oct 2^nd, 2007, 3:31am

I understand my friend. I have been there as have most of these folks. If I had been with you I would have slapped the piss out of at least two of them for you and when they cried asked them to leave before they scared the kids WTF... Crap that pisses me off. Sorry, believe it or not I am very good natured myself. I crank the oxygen up to top end as I have seen sug. here that seems to help. Seems like the faster you start the better the results. It is a god send having this site and OUCH site. I am with as is everyone else. We understand. Lonnie

Title: Re: Public attacks and other humiliating things.
Post by phil_h on Oct 2^nd, 2007, 3:51am

Sorry for your pain and suffering. This certainly can be emotionally , physically and spiritually draining.... It is no help to live in a world where few seem to really understand what your experiencing........ My first use of o2 wasn't all that successful . When I came back to trying it again , I got a better regulator and a new clustermask. It's been my mainstay eversince.... I can't use verapamil or immitrex anymore, so it's o2,icepacks,redbull and cold showers for me . When I was getting hit by 7-10's every few hours nothing helped at all,except the o2 . You made need to build your own MD. Educate him/her with website materials and articles sighted by Bob Johnson , here on site. Show the MD your pain calendar and KIP scale.. I wish you pfnad's or at least some relief,,,, phil h

Title: Re: Public attacks and other humiliating things.
Post by BarbaraD on Oct 2^nd, 2007, 7:07am

Miz D -- why didn't you bitch slap that damn nurse? (and I'm a really nice little old granny type person, but that was a little much for a PROFESSIONAL caregiver!). I grabbed a nice RN's throat in the ER one afternoon when he asked me if I was pregnant! He "learned" a lot about CH before the doc came around and explained it to him 'again".

And then there was the hit in the doc's office and his little PA - had his little lab coat, sceaming at him for trex when he wanted to weigh me. (we never did get weighed), but he "learned" a lot about CH. Somehow got my hands from his coat to the doc's and the doc's chest seemed like a good place to bang my head - 5 people couldn't pry me loose - the whole office learned about CH during that time until they got me trex and it went to work. My doc didn't argue much with me before that incident and NEVER argued with me AFTER that - and if I called the office and mentioned "headache" it was PRIORITY (he's retired now and I"ve moved so I'm having to break in a new doc now).

What I'm getting at is YOU have to be ASSERTIVE about YOUR treatment. YOU are the ONE in PAIN. Most docs don't know what to do unless you TELL them (go armed with print outs and knowledge). If you can't take Maxalt (and I can't either) TELL them! If you want O2 TELL them and keep on till you get it! Or find a different doc (you don't even want to know how many docs most of us went thru until we found one we could work with).

A robbery in the middle of a hit? Geezzz! That's cold. don't know what I'd have done, but I get violent if anyone gets near me, so....

But hang in there and be more aggresive in your treatment. We've all got your back.

Hugs BD

Title: Re: Public attacks and other humiliating things.
Post by Beastfodder on Oct 2^nd, 2007, 7:47am

Unbelievable stuff - I can't imagine how you kept your temper with some of that nonsense going on around you but all credit to you.

Only ever had a couple of public hits - one in the doctor's waiting room which was fine, the other time I got hit driving then the tax man phoned me.

I'm sure he didn't deserve the abuse I gave him but just couldn't help myself.

Title: Re: Public attacks and other humiliating things.
Post by Miz_D on Oct 2^nd, 2007, 3:14pm

Thanks everyone for your support...they are much appreciated. Damn, I was feeling low yesterday...Mahalo for pucking up my spirits!

Title: Re: Public attacks and other humiliating things.
Post by Linda_Howell on Oct 2^nd, 2007, 3:41pm

Even after 21 years of chronic CH, I STILL find myself apologizing to whoever had to be around me at the time of a hit. I even found myself saying "I'm so sorry" a few times at a convention to another ch-er. So please don't think you're alone in that.

One of the best things that ever happened to me though was going in to see my Dr. about an unrelated condition and while I was waiting in his office for him to come in...I got hit. By the time he did come in, I was about to peal his wall-paper off the walls. He stood there looking at me, ordered a shot of Imitrex and after it was over, REALLY sat down with me and talked and asked questions. I have never had any problems since convincing him of what I need.

I say this because maybe that is exactly what your Dr. needs to see in order to treat you better. Seeing someone get hit is not something that anyone forgets easily.

Linda

Title: Re: Public attacks and other humiliating things.
Post by Beastfodder on Oct 2^nd, 2007, 7:14pm

You can always direct people too youtube - there's some graphic reminders of a CH hit been posted last time I looked.

Title: Re: Public attacks and other humiliating things.
Post by clusterwife on Oct 3^rd, 2007, 7:30am

One time, kevin sneezed at the mall. Since his left side of his face is numb, he couldn't "feel" the clob of boogers/snot in his left-nostril. Well, he shopped around, and of course, no one told him of this. He was there for 3 hours shopping, when he passed a mirror on a pillar, and was horrified at what he saw! He said it was huge and gross. Cracks me up everytime I'm in a bad mood. I wonder what the people were thinking when they saw THAT! O the travels of a clusterhead!
Leah.

Title: Re: Public attacks and other humiliating things.
Post by SouthBronxSupreme on Oct 4^th, 2007, 3:40pm

I cant even watch the whole video, my head was starting to hurt

Title: Re: Public attacks and other humiliating things.
Post by DennisM1045 on Oct 5^th, 2007, 9:59am

Hey D,

I'm sorry you didn't find more compassion in that office. It was very unprofessional and rather inhumane of her. I'd have bitch slapped her once I got my head back together.

Anyway, I hear ya. Either people want to help and end up in the way or they treat you like you have something they can catch or they ignore you and are callous to your suffering. In the end, any of all of these reactions are enough to make the situation worse. It's why most of us like to suffer in private.

I got hit at my Son's cross country meet Wednesday afternoon. Fortunately I had an e-tank with me. I sat in the car and huffed away till the hit passed. Several people noticed but fortunately they all stayed away. I got some funny looks from people that didn't know me. It all just comes with the package.

-Dennis-

Title: Re: Public attacks and other humiliating things.
Post by sninja on Oct 8^th, 2007, 1:58am

Doctors are idiots when it comes to caring for patients with disorders they have never suffered from themselves. Especially when they can't solve a medical condition on thier own. Their egos are so big that they refuse to listen to their patients because they feel they are the all mighty super intelligent ones who got through medical school & what the hell does the patient know about medical conditions ect. I am so sick of the know it all attitude they have. I myself have worked for physicians all of my adult career. Trust me the reason they say they are in a medical practice is just that! They still have not gotten it right so they are practicing at it..ha ha!!! My mom is an xray technician & she too agrees with me after working with the arrogant pompous asses that alot of them are. Not all of them, once in awhile you will come across a physician who is truly out there to help people & is a good listener & understands they dont always have the answer & are willing to try new things & have faith in what the patient is telling them. But by far most are motivated by greed & the big ego they carry around with them. Usually the good ones out there are not accepting new patients because they are good doctors & their patients realize it. I just had to sound off after reading your disatisfaction with yet another know it all physician.

Title: Re: Public attacks and other humiliating things.
Post by Miz_D on Oct 8^th, 2007, 5:35pm

Thank you again for all the support and experiences that you have shared, it really helps to know I am not alone in this, not crazy and not exagerating the seriousness of the condition.

An update to my condition: head is still going crazy and ended up in ER last night for the first time for CH related stuff. I put together an envelope with the whole printout from this website under 'medical info", a letter written explaining what was going on with my condition and a brief history of what has and has not worked in the past and what I was looking for from that visit (Predisone or IV DHE). I also asked my the excellent nurse of my wonderful old neuro Dr. Robinson for copies of his consultation notes which she emailed to me immediately. Lastly, I wrote up a personal "do & don't paper" for when I am experiencing an attack and need to thrust it in someone's face.

So, even though I still feel like crap, I feel pretty good about how pro-active I am being about my CH. I have fought for my condition before and will do it again for sure. Have an appointment with a neuro on the 15th...wish me luck...

Thanks again for being here.