so tired of the pain!

[brainpain]

Hi all,

im a 46 year young man. ive been suffering for years now! in 1997 i was electricuted with the dreaded 480 volts. i was working for a city municipality that didnt want to hire the proper people to handle the job. i was new to the job and did have some experience with electricity. the problem was the mayor, who owned a contracters license and did work for the city as a contracter. the city he was the mayor of! everything was miss marked and i trusted it. my mistake! the entire complex was less than a year old! come to find out, all the wiring was substandard.

after being electrified with the 480, i woke in the u of u burn unit salt lake city. the pain started on the way home from the hospital! the level of sicness was scary for the first year. so violent and so so painful!!! ive had a deep brain stem probe implanted in my hypothalmus. kinda like a pace maker. the drs keep comparing me to the people with naturally occuring migrains. no one will look at the fact that i never had migrains before this accident. im treated like these are naturally occuring. every med on the market has been tried and tried at the strongest dosages. winding up in the emergency rm for kidney stones 4 different times. bata blockers! yuck!!

i write this because im tired and im tired of fighting this. it seems every day is a struggle! there has to be a better way!

i dont want to throw the towel in! ive tried very hard for a very long time. ive grown cannabis that seemed to help, but where i live i have to grow my own and it took so much money and time! ive not much of either. it was tough, i dont grow any longer. the drs have put me on the marinol 10 mg gel caps. not much help! cannabis was much more effective!!

im a guy that love to be busy, this is killing me!

is there anyone that has the time to deal with a person like myself? id be so greatful for any guidence! any!

im lost and would like to find myself, before things get out of hand. depression seems to be growing, im not fond of this aspect!

peace to all

[Bejeeber]

Hey BP,

First, it's hard to find the words to express how much I admire your perseverance. With an attitude like yours I bet you will actually beat this thing!

I'm not qualified to guess whether the "clusterbusting" methods described here might benefit you, although I can tell you they certainly have helped many who have suffered from cluster and/or migraine attacks.

There is real reason to believe that these clusterbuster substances can affect some real resetting/repair of the hypothalamus function.

For those who do try this approach, Rivea Corymbosa, or "RC" seeds are generally suggested to try first, because taken before bed, the typical side effect is that they just provide an unusually good night's sleep. No tripping, such as is experienced with other busting agents such as psilocybin mushrooms.

RC can also be mail ordered and possessed legally, and has been used for these conditions for hundreds, if not thousands of years by indigenous peoples who clearly had it it much more together in this regard than our modern toxic chemist doctors with their beta blocker crap.

Maybe you could describe the nature of your head pain, including details on where in the head it is located, how often it occurs, duration, intensity, stuff like that?

Glad to have you here BP. 

[brainpain]

bejeeber,

kind words! much thanks!

the pain is constant, on good days its a 2 or 3 on the pain scale 1 to 10.

the pain is always located in the frontal left lobe, if you were to take a quarter of my brain. the left frontal portion, back to my ear and below my left eye. thats the place the pain always resided. all to often the 10 is hit on the pain scale. those days r so difficult to get through. then there is the after discomfort, i always feel like ive been run over by a mack truck and backed over again! these happen 2 to 3 times a month. the worst ones.

other attacks are not quite so bad, just 5 to 8 on the pain scale but still crippling! i use oxygen at 15 lpm then the damn prescribed meds that i feel r making things worse!

but what do i know.

i do have the medtronic device to adjust the stim. implanted in the hypothalmus. im not schooled enough for the device and the drs gave up on me. i was the 7th person in the usa to have the operation done for just this problem. i dont want to make things worse. the top voltage i got up to was a continous voltage of 3.5 volts. no fun!!!!!

frequency is. now i cry! crap, sorry emotions take over from time to time. im a guy that has to be busy!

way to often i usually wake with one everyday, most seem to disapate and some get much more intense. some wake me and they are the worst! the stomach contants usually come up before i make it to the bathroom!

[Bonkers]

Damn, dude! Who'd you piss off? Sorry, don't mean to make light of your really lousy situation. There's no way of knowing why we happen to get the hand we're dealt. It most certainly doesn't have anything to do with the kind of people we are or how we live our lives. $hit just happens.

We have no choice but to do the best we can with what we've got. You had a horrible accident and one of the consequences of that accident is that you've got these awful headaches. There's no way to know from what you've told us whether or not what you have is cluster headaches or even if they can be treated in the same way as cluster headaches. What we do know is that there are many kinds of headaches, many of which can mimic cluster headaches. We also know that medical science has paid far too little attention and devoted far too few resources dealing with an invisible malady that is far too often dismissed as inconsequential. I mean, if you can't see it, if there's no blood and no bones sticking out anywhere, how bad can it be? Try going to the E.R. on a Saturday night and tell them you've got a horrible headache and it's killing you. You don't even count. Some times you can even see them snicker under their breath as you're sent to the back of the line.

I hope we can help, BP. There're a whole lot of things mentioned here that might help. But, some of them might hurt and there's no way for us to know which is which. I hope you've got some sort of "Guidance Counselor" in your corner to help you decide which - if any - of the remedies we use might be beneficial. You need to find (unless you already have) a "Headache Specialist," a neurologist or pain specialist trained to recognize headache types and propose treatments. Look in the Yellow Pages. You don't mention the types of doctors treating you or if you've been given a proper diagnosis. The more you let us know, the better position we'll be in to offer suggestions.

[spiny]

Hello BP,

I'm new here, but you came to the right place to get information and converse with people who KNOW how crippling this pain can be.

The only suggestion that I can make is to up the O2. I use 25LPM to start and then 15 or 20LPM when I am no longer writhing in pain. The higher flow seems to be necessary for many, if not most. Since you already have a unit, can you get a regulator for 25 or 50LPM? Fifteen just seems a bit too low for good relief. Regulators can be bought over the Net for about $50.00 and no script needed.

In my life, this will kill the Dragon at least for a while. However, I do find that it will still return, on schedule. But, as I explained to my husband, it still beats the H... out of suffering at a 8-10 for 1-2 hours. Also, after I kick it back, sometimes the next 4-5 hits are weaker and shorter in duration. If you are currently prescribed O2 I doubt that higher would be a bad thing. Be sure to completely empty your lungs with force and then inhale. Picture a beach ball, force the air out and then the good O2 coming in to re-inflate your lungs. Expand top, bottom (diaphragm pushed down and up), and sides. Even though I no longer need to visualize the ball, it helps to focus my attention away from the pain.

Others have had some success going to the ER for emergency O2. Perhaps you could try that over the holiday if needed. Tell them you need high flow O2, at least 25LPM with a non-rebreather mask. Not a canula!!!!!!! They DON'T work!

There will be more folks around the board after the holiday. I didn't want to leave you alone and in pain, ya know? I have found it really helps to get a reply from someone.There are lots of things to try, so don't give up! 8-)

As for the other, I have worked with up to 480 volts myself. That is some bad $hit! > Hopefully the 'city' that allowed this is paying for EVERYTHING! >

Stay safe,

spiny

[brainpain]

Bonkers & spiny,

the level of appreciation for the time you both took surprised me! i was under the impression i was alone in this nightmare! may you have a wonderful holiday season.

Bonkers

ive had many many and still have a 1-neurologist ,2-check ups with the brain surgeon, 3-pain drs, 4-psychologist, 5-dr for low testostereone. can not remember the type of dr.

ive no one to help, just me. ive been struggling for far to long. drs dont seem to know what to do! frustrating for all of us. sick and tired of the drugs they prescribe! thanks very much for the discription you gave. spot on! be well!

spiny

im taken back, you describe little thisgs like you know me. ill try the 25 lpm. thank you for the idea. the ball idea ive never heard. no ones ever said 25. they gasp at the 15lpm.

thanks ever so much for the kind words.

the city is paying for all drs meds and almost 50% of my wage. im not destitute but sure feel that way.

i need a better life and stop all the drs perscribed meds!

thank you both!

bp

[Bejeeber]

Hey BP,

And while we're at it, the D3 regimen that has helped some clusterheads and migraineurs might be something for you to also consider?

It is reputedly something that can be just plain good for your general health anyway, especially if you're not out in the sun a lot every day.

Here are the details:

http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804

If you belong to Costco, here's photos of everything that can be easily found there (copied from a recent post by "Batch"):

Anti-Inflammatory Regimen Supplements

The original or "Basic" anti-inflammatory regimen I've used for over a year consists of the three supplements shown below purchased from Costco for $35 or 20 cents a day for a five-month supply.

The daily dose is two tablets/capsules of each supplement as shown below.

[brainpain]

im on the d-3 regimen now, have been for yrs. Thank you! i used to try so many different herbs, minerals and most everything accepted in the world we live in. nothing really helped some made things worse! my blood levels suck. im a little nervous, 253 colesterol, sodium maxed, along with a few others! drs appointment on the 4th of jan. its not for any of the blood word results but for medically low testosterone.

ive been on 100% disability for 10 yrs now! life just dosnt mean the same. where did all my enthusiasm go? drive-gone!

why the heck is the depression monster so strong!? on good days hes on overdrive. i used to be a very energetic guy. high on life and my family! i still have my life and my family but not the happiness, energy.

wow! nuff about this.

thank you for the info!

bp

merry christmas

[Bejeeber]

Well there have been some guys who have reported that when they got their testosterone levels raised back up to normal their attacks went away, and they had better energy and mood. For them it was like a magic bullet.

So that sounds like something to be hopeful about coming up really soon in 2012, no?

Hang in there BP, it certainly sounds like you have a tough case, due to the incredible 480v blast that caused it, but there really may be something out there that can help, and considering that O2 helps you, I would hope some of the other cluster remedies you haven't tried yet could help too.

You're not on verapamil now are you? Just asking because many report losing all energy when on it.

Merry Christmas to ya, and here's to a kick ass, testosterone fueled, energetic 2012! 

[Bonkers]

BP,

The methadone that both my son and I take put our testosterone levels in the toilet. The creams are really messy and shots require an expensive, biweekly Dr.'s visit. A new form recently came on the market that works like roll-on, underarm deodorant. Axiron, made by Lilly, is easy to apply, cheap ($25/month) and seems to work better than the other forms. You might mention it to 1 of your 5(?) endocrinologists. I'll bet a big boost in your T-level will make "everything" better!

Ron   

[MoxieGirl]

I've mentioned that my clusters started 5 years ago, but I haven't mentioned why. Perhaps unique to most people here, I know exactly why mine were triggered. I haven't mentioned this before on this board, but the topic of testosterone is near and dear to my heart, and probably my clusters too.

5 years ago, I changed my body from a testosterone based one, to an oestrogen based one. That is to say, I was born male but am now female. At the time, I was on a very strong anti-antigen, that effectively shut down my testosterone, and at the same time on very high doses of oestrogen. That is when my clusters started.

I know I have a lower dose of testosterone in my body today than I used to. Even before I had the vile testosterone producing glands removed from my body. One way to tell is in the strength of your fingernails. Strong, unbreakable nails means you have quite a bit of testosterone. Brittle nails, means you are low on testosterone. Not a precise measurement I know, but a rough indicator. I had strong nails up until 5 years ago, now they are extremely brittle.

So, there are a couple of theories here. It is believed that when a person changes their hormone system, as I did, it alters or impacts on the hypothalamus. Which of course is also suspected to trigger clusters. My neuro believes my hypo was predisposed to clusters, and changing my hormones just triggered it off.

But, I believe Omega 3 seems to help with one's testosterone levels. I have friends that take it, and all report to be more horny, have stronger orgasms and more energy - additional signs of higher testosterone, like the fingernail test.

My neuro doesn't think that if I increase my testosterone, it will help with my clusters. But I'm not sure I believe that. I think it is a key ingredient, and a possible explanation why Omega 3 is so helpful.

Also, during my HRT process, my doctor had tried me on a few different forms of oestrogen. I started taking a pill form, that seemed to be OK for my body. But he switched me to patch because it was suppose to be better. But it was while I had the patch that the clusters started. I went back to the pill, and although was happier with it, the clusters have remained. So, I'm not 100% sure it was just the fact I altered my hormone system, or could it be that my body didn't agree with the type of hormones I was getting in the patch. I will never know.

So, that's my story with testosterone and clusters. I very much believe the two are linked.

Renée

[Bonkers]

Congratulations on your transition, Renee. You must be a very strong woman. And, you've gotta lotta balls (sorry, couldn't help myself) to follow this most difficult path out of what must have been a very difficult life before your transition. I hope together we can find some relief for your HA's.

Ron

[Bejeeber]

What Ron said. Well maybe except for that one colorful comment.   ;D

Really hoping that the busting can reset the hypothalamus regulation of hormones for ya, or whatever it's known to do in the brain there that will "untrigger" your predisposition to CH.

[MoxieGirl]

Thank you both for your comments, it is much appreciated.

The OP is about being 'so tired of the pain'. For me, it is more about being so tired of the depression, suicidal thoughts and yet another battle. Although the pain plays a part too, of course.

I lived with depression and suicidal thoughts all my life, until that is I started transition. Taking hormones lifted me out of depression for the first time, ever. And when I finally had surgery, it was like a miracle. A wish come true. But then there were the really bad migraines, more frequent than I've ever had before, the daily chronic headaches and of course the clusters. All this has returned me to a life of depression and suicidal thoughts.

Just when I thought I'd fixed 'me', and life was going to be better. That is my real hatred of the demon. That is what makes me curl up in a ball and cry at night.

And for the first time in 5 years, I have hope. Hope of defeating, yet again, depression. Hope that I can wake up in the morning not thinking about making this my last day on Earth.

If I had known cluster headaches was going to be a result of transition before I started, I would stil have transitioned. That decision in my life I would never change.

And as for having balls, well, I fed them to a dog after surgery.

Renée

[Pixie-elf]

ROTFL Renee at the dog comment. You are a damn strong woman to have gone through that transition!

I think I'd go with my gut and have them check the testosterone levels either way. Even women need testosterone. There's a thread on CH.com talking about women and men who have had it correct their CH. I don't know how much it would cause problems with the estrogen... But my main thought is : If you think it might have to do with your clusters, get it checked! Even if your doctor doesn't think it'll work, you should go with your gut!

Mystina

[alleyoop]

If I had known cluster headaches was going to be a result of transition before I started, I would stil have transitioned. That decision in my life I would never change.

Not questioning your decision in any way Renee.  Just saying as a heterosexual, transitioning to the opposite sex is so alien to me that the thought of doing it would never enter my head unless I knew that it would be the end of my cluster headaches.  If I were still suffering like I did at one time, I would most likely consider it.

[brainpain]

frontal lobe lobotomy-the home kit!-DIY!

ive asked many times for such a thing

my test. levels are at 800 now!  i did cut 1/2 the oxycodone hydracloride out. 90ml/month. made a huge difference in everything but the  monster!

yea the voltage did screw things up. my arm is much better! i thought it would never heal all the way! dont complain about it because the monster keeps me busy!

i would like to see some resemblance of my life again!!!!!

bp

[MoxieGirl]

ROTFL Renee at the dog comment. You are a damn strong woman to have gone through that transition!

I think I'd go with my gut and have them check the testosterone levels either way. Even women need testosterone. There's a thread on CH.com talking about women and men who have had it correct their CH. I don't know how much it would cause problems with the estrogen... But my main thought is : If you think it might have to do with your clusters, get it checked! Even if your doctor doesn't think it'll work, you should go with your gut!

Mystina

Thanks Mystina for your comments. I used to be on a 2mg maintenance dose of oestrogen. Then, about 5 months ago, my neuro thought that coming off of that would stop my migraines, at least it does in genetic woman undergoing HRT. So I stopped it, and at the end of Jan my doctor has agreed to get my hormone levels checked. We mostly want to make sure my body is producing enough oestrogen on its own that I don't need the maintenance dose. But I am also going to make sure my testosterone gets checked for this very reason.

But, taking a testosterone pill doesn't just automatically raise ones testosterone levels. It's not that straight forward, and I have to be very careful about it triggering other aspects in my body I don't want! Will report on it in my diary next month.

Alleyoop, I know what you mean about the idea being completely foreign to you. That's normal. You feel normal in your skin, so why would you consider changing anything? I didn't feel like you feel until I was 42. Not a day went by before that, that I didn't hate the body I was in. Perhaps I should start a new thread on this topic, don't want to take this one over from the OP.

Renée