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Re: electricuted in 1997 cluster migrains started less


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Hi brainpain,

It's very difficult to understand you. From what little I could understand, your story makes me cry. I'm sure that anyone reading will want to help but we need to better understand what your problems are. I can't tell whether your head pain is from the electrode implant or if the implant was placed to control your pain and if that pain is cluster headache, migraine or something else. Do you see a Neurologist or a Pain Specialist or a Headache Specialist? Could you ask someone who knows you, perhaps a family member, to write your story for you as it must be especially difficult to write when you are suffering so badly? We want to help. Please don't leave until you find out if we can help you or not.

Ron

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Hi BP,

Has anything you've tried given you any relief? What do any of your Doctors want to try next? It's hard for me to imagine that a Headache Specialist would term your pain Cluster-Migraine, but I'm far from an expert. Others here know far more than I. Let's hope that some of them will see your post and enter our discussion. This forum has only recently begun. Some of the old-timers to cluster headaches, the ones who know the most and can help the most, only read the new posts weekly or even less frequently. Please be patient for a few days and see what we can do to help. Wishing you only the best.

Ron

p.s. - I care for my son who is also a CH sufferer. I don't know 1st hand what you're experiencing. I'll get back to you tomorrow.

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Hi BP,

I've sent messages to some of the smartest people I know, asking for help for you. Please allow a couple of days for them to respond. I bet you'll be pleasantly surprised. I'll check back with you tomorrow.

Ron

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electricution caused headaches

drs call them cluster migrains

tried everything in the books for the headaches

in 2006 brain surgery was done in the effort to eleviate some of the pain. no sucess.

Hello BP,

From the way you describe your operation it sounds like you had DBS done.

Before we try to offer anymore advice, could you just clarify a couple of things please?

Where did you have your surgery done, & who performed the operation?

Hang around BP, be honest, & if we can help, we'll try.

ATB...CArl...

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Hi there :)

electricution caused headaches

Can you please tell what this means? And why you got electrocuted?

DBS can be done for different reasons, is it mono or stereo?

Did you have any complications right after surgery etc? (except from the headache off course...)

You do as you as you wish now? Please explain a little? You don`t agree to what they suggest, or what do you mean? And what do they suggest?

Everyone here are very friendly, helping people, wishing other`s well. But please, there are many details to consider here. That`s why people ask, so they can help out.

Wishing you well, hope you post soon!!  :)

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Hi BP,

From one short fuse to another. Please don't take the questions wrong. The people here are only concerned for your well being and want to help. Your first post you asked for help. I myself wanted to answer right away but was worried I might give you wrong information. No one is questioning you, they just want a little more information before possible offering some wrong advice. Hang in there, no surprises here. It's simple, cluster headache sufferers get relief from tiny doses of hallucinogens. That's the plan. There is hope, but need to prepare for the first step.

                                      Leslie

                                          

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Brain Pain:

Sorry if we've triggered your short fuse, I assure you that was not the intent of anyone.

CH alone are complicated enough, and from what you've said you've got some other serious stuff going on overall.  Complications of electrocution, implants, etc.

I feel for you, we all do.

This board is mainly geared up for help in exploring treatments into CH with indole-ring compounds.  the members here try and help those new to our board, in order to do that we tend to ask a lot of questions.  We are not medical staff, we can not diagnose over the internet but in order to make any recommendations we try and gather as much information as we can.  If we came across as being short or uncaring, I apologize for everyone.

These treatments are not for everyone even their their only health issue is cluster headache.

I don't know if you have posted your situation on ch.com, but there you may find more general advice and some answers to your questions.

I'm not trying to brush you off, you are welcome to remain with us here, but you may find more help on the Medications, Treatment and Therapies board there.

I wish you the best in your search.

FunGuy

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Hi BP,

You seem to take offense at other's questions but your anger is misdirected. No one here is prying into your life; we just don't know how to help unless we know what's wrong. It sounds like your life was evolving well and you were happy until you were electrocuted. The result of that was these disabling headaches you're suffering from. Your Doctors implanted an electrode in your brain hoping to provide you with relief. It didn't work. Now you're asking us for other ideas. Is that right?

If that's right, I'm very sorry but I don't see how we can help. Please don't abandon your Doctors. You don't say where in the world it is that you live. If you live here in the U.S., your accident should have been covered by Workman's Comp. and you can shop around - with our help - for a Specialist that can help you at no expense to you.

It's very bad form to be angry with people who are only trying to help you.

Ron

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No one is questioning your plight or sincerity. Until we have a better idea of what is causing the headaches and the correct medical diagnosis, as well as what has been tried, any direct advice would just be guesses. Not a good thing when dealing with such serious issues.

Let me try to ask a few questions that will help all of us.

1. What "major" medications have been tried and were they completely useless or did they offer some relief?

Prednisone?

Imitrex? (or other triptans)

Lithium?

Depakote?

Verapamil (if so what dose was the highest?)

others?

2, Are the headaches constant or come and go? (if they come and go, what is the approximate frequency and duration?)

Cluster-Migraine was for a long time thought to be a misdiagnosis and probably was but has evolved a bit and is actually used by some headache clinics/experts.

It would refer more to a migraine headache with a pattern that mimics a cluster cycle. Such as several of them in a day rather than a 3 day non-stop banger. So, your diagnosis may be correct and I wouldn't argue with your doc over it.

Some people think that nausea only occurs with migraines but it is present in a small percentage of cluster sufferers.

It can get tricky coming up with a correct diagnosis for even the best of docs, for a unique set of people/symptoms. Most times clusters can be diagnosed very easily. But, it still takes some people years (for some ungodly reason) to get diagnosed properly. This is another reason for people wondering about symptoms.

many people report some trauma that triggered their cluster headaches. A deep sea dive, an accident with head trauma, a bar fight (usually on the losing end ;-) etc.

Deep Brain Stimulation is being used sometimes to treat headaches. Not well enough for my taste and its all in the very early stages of clinical testing. So far the results aren't very good that I know of. Yes, you're correct that it was first used to treat things like Parkinson's and I think those results are better than headache treatments.

My guess is that you've already tried all the usual medications and the docs thought the DBS was the next step.

That may be based upon what the conventional medical establishment has to offer but I can assure you that there are other things that can be tried that can not be prescribed (yet)

Most of us here have been in your position of feeling we are more trouble than we're worth to those around us.

Talk to us. Next time you feel like you're taking it out on those around you, come here and vent. We can hear you and understand you.

Bobw

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I have some experience with electrical hazards and response. Even worse I have been knocked around with 480 volt many times out of lack of respect for my surroundings. And have seen an arc flash occur at 7600 volts less than 20 feet from me and the resulting burns on another.

All of these incidences have been very fortunate to have no lasting damage

For those who dont know,  electrocution or beyond a shock can occur at any time a circuit exceeds 10 amperes as a rule and at most any voltage. Below that amps or current draw one can generally let go of the circuit called a let go current.

Majority of shock hazards occur below the brain and simply dissipate into the ground the person becomes the conduit. Burns, heart palpitations etc are the general symptoms and death can occur.

Above the let go currents or a sustained current in the body the bodys fats and muscle can heat up like an electric heater and with the high resistance in human tissue, like a heater, these body temps can reach very high temperatures.

The CNS can become overwhelmed and short circuit. Especially when the point of contact is the head.

Thought a quick summary in case anyone cared would be helpfull though by no means complete as there is much more to it than that.

Many of the symptoms of electric shock are depression, cellular damage, muscle paralysis or injury, etc.etc... in a large percentage though misunderstood the neural net will often correct itself over time in many cases.

DBS appears to operate on similar principals causing a reaction in the neural signals to or from the brain with a very low current. From what little I have read on the subject of Direct Brain Stimulation, depression, confusion and headache can be a major side effect of DBS when the method is used for other reasons such as movement disorders.

The science as to how DBS works remains unexplained in full and still experimental though the theory sounds good.

Brain Pain, Welcome to the site.

Understanding that none of us are fully aware of your situation without more of your input we can only quess and make comments but its up to you to use or direct as you see fit.

If your reading this and I were you (though I'm not) I would talk to the docs about trying a disconnect for a few days of the DBS and see if any advantages without the stimulation occur.

Over time if no positive results have occured why continue with it.

The knowledgable people here can help to reassess the situation and even possibly with your docs review help provide new insights.

Like everyone else says we all are here for you at anytime day or night. Though responses may sometimes take a day or so.

Many here have gone from the ultimates of frequent and extreme pain, similar to you, to being pain free.

We come to these sites not only for ourselves but for the greatest joy of possibly helping others.

With your experiences you too can help others and hopefully help yourself and family in the process.

MJ

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  • 3 weeks later...
ill take no offence to you askin me to leave. please no more questions.

bp

No one is asking you to leave BP, but how on earth do you expect to have answers to questions we cannot ask?

CArl...

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