Brain Surgery

[EzekielAnon]

Wish you the best! My prayers will be with you so the good Lord blesses you with the desired outcome.

 

[method2madness]

Wish you the best! My prayers will be with you so the good Lord blesses you with the desired outcome.

Thank you brother, my family and I are grateful for your support and prayers

 

[maldorf]

What meds are you on that are causing you sleep issues? But hey, any day you wake up is a good one right?

Mexiletine. It is an arrhythmic that I had to start back in March because my problem got worse. I have worked the dose down but it still is bothering me. I feel like I never get any deep sleep, and wake up a lot. It is what it is though. Like you said, I wake up so that is good. It could be a lot worse.

 

[method2madness]

Mexiletine. It is an arrhythmic that I had to start back in March because my problem got worse. I have worked the dose down but it still is bothering me. I feel like I never get any deep sleep, and wake up a lot. It is what it is though. Like you said, I wake up so that is good. It could be a lot worse.

It's probably something you've already covered with your doc but are there any other treatments/meds, cardio protocols, anything...? Sorry you're having the sleeping troubles brother, I really hope your able to find some rest. Best of luck

 

[maldorf]

It's probably something you've already covered with your doc but are there any other treatments/meds, cardio protocols, anything...? Sorry you're having the sleeping troubles brother, I really hope your able to find some rest. Best of luck

Only other med that would work for me is amioderone and that is really hard on the body. Kidney troubles down the road etc. I am taking a large dose. Started out on 600 mg/day mexilatine and down to taking 450 on day and then 550 the next. What I am taking now is pretty much the best option for me. The dose has to be high because we are dealing with ventricular fibrillation. Any dose much less than that and I will go into v fib. Found out last week when I tried to drop down and my defibrillator had to blast me. The doc's office called the next morning because I have a wireless monitor next to my bed that sends a report to them over the phone line if something happens. The nurse said my heart rate was 244!

Most terrible feeling in the world. Each time it happens I wonder if this is my last time. Someday the defib may not put my heart back in rhythm. The cardiologist set my defibrillator now so that it only tries to pace me out 1 time rather than 3. When it was allowing 3 tries I would pass out completely, which would result in a bad car accident and possibly death if I am driving. I still drive the family etc. Never gone off when I am driving thank God. Since he set it to one try I have had it go off once, that is since mid March. Before that I was lucky in that I would be passed out and not feel a thing, but cant do that because it is too dangerous. Battery has lasted me about 9 years so far and has about 3 yrs left. I hope I just make it 3 years.

I do sleep some, enough that it isn't too terrible. Since I lowered the dose down from 600 per day. Sleep is far from normal though, but I think I am just getting used to it.

 

[method2madness]

Only other med that would work for me is amioderone and that is really hard on the body. Kidney troubles down the road etc. I am taking a large dose. Started out on 600 mg/day mexilatine and down to taking 450 on day and then 550 the next. What I am taking now is pretty much the best option for me. The dose has to be high because we are dealing with ventricular fibrillation. Any dose much less than that and I will go into v fib. Found out last week when I tried to drop down and my defibrillator had to blast me. The doc's office called the next morning because I have a wireless monitor next to my bed that sends a report to them over the phone line if something happens. The nurse said my heart rate was 244!

Most terrible feeling in the world. Each time it happens I wonder if this is my last time. Someday the defib may not put my heart back in rhythm. The cardiologist set my defibrillator now so that it only tries to pace me out 1 time rather than 3. When it was allowing 3 tries I would pass out completely, which would result in a bad car accident and possibly death if I am driving. I still drive the family etc. Never gone off when I am driving thank God. Since he set it to one try I have had it go off once, that is since mid March. Before that I was lucky in that I would be passed out and not feel a thing, but cant do that because it is too dangerous. Battery has lasted me about 9 years so far and has about 3 yrs left. I hope I just make it 3 years.

I do sleep some, enough that it isn't too terrible. Since I lowered the dose down from 600 per day. Sleep is far from normal though, but I think I am just getting used to it.

Your situation sounds a bit scary but it seems like you're managing it well and on top of things as best you can be. Ypu're a hell of a brave man living with what you have to deal with! Does your state have a medical marijuana program? I ask because I live in New Jersey and I was enrolled in my states program to help treat my condition, but while it didn't help my epilepsy it did help me to sleep much easier and deeper for longer periods of time which relieved stress and secondarily reduced my chances of going full grand-mal. Maybe it could help you if there are no cardio vascular effects? Something to think about at least...

 

[maldorf]

Your situation sounds a bit scary but it seems like you're managing it well and on top of things as best you can be. Ypu're a hell of a brave man living with what you have to deal with! Does your state have a medical marijuana program? I ask because I live in New Jersey and I was enrolled in my states program to help treat my condition, but while it didn't help my epilepsy it did help me to sleep much easier and deeper for longer periods of time which relieved stress and secondarily reduced my chances of going full grand-mal. Maybe it could help you if there are no cardio vascular effects? Something to think about at least...

I would have tried that a long time ago, but marijuana easily triggers tachycardia even in healthy hearts. It would surely lead to my early demise. I smoke it in the past recreationally but that was many years before my heart attack. It really does help with sleep. Probably would help some with my mood too. Too bad I cannot try it.

 

[Turkishexpress]

Good luck brother!

 

[method2madness]

I would have tried that a long time ago, but marijuana easily triggers tachycardia even in healthy hearts. It would surely lead to my early demise. I smoke it in the past recreationally but that was many years before my heart attack. It really does help with sleep. Probably would help some with my mood too. Too bad I cannot try it.

I was unaware of the severe potential tachycardia, under stable and definitely something to stay FAR away from! I guess just keep training regularly and keep the heart working with bothe exercise and your device. Of course you know that, but brother if you ever feel like talking pm me, gym junkie to gym junkie, teacher to teacher, man to man. Peace brother!

 

[maldorf]

I was unaware of the severe potential tachycardia, under stable and definitely something to stay FAR away from! I guess just keep training regularly and keep the heart working with bothe exercise and your device. Of course you know that, but brother if you ever feel like talking pm me, gym junkie to gym junkie, teacher to teacher, man to man. Peace brother!

Thanks. I forgot you teach too. I just substitute now. I don't think my heart could stand up to the stress full time! I used to teach Chemistry, Biology, and Gen Science grades 7-12. One cool thing is that I can really help my girls now that they are in high school and junior high. The only thing that sucks is that neither one is really big on science like I am. Both of them are great straight A students though and make me proud!

Keep on getting better. I hope that surgery gets rid of your seizures, for the most part. If my condition gets worse I can probably find a cardiac surgeon to operate on my heart. The Cleveland Clinic does a good job. It can be brutal though for what I am seeking. Talked to one guy that had the surgery 6 times before it took care of the problem. Can your brain surgery be like that, and require surgery again later on to get more of the "bad" tissue?

 

[method2madness]

Thanks. I forgot you teach too. I just substitute now. I don't think my heart could stand up to the stress full time! I used to teach Chemistry, Biology, and Gen Science grades 7-12. One cool thing is that I can really help my girls now that they are in high school and junior high. The only thing that sucks is that neither one is really big on science like I am. Both of them are great straight A students though and make me proud!

Keep on getting better. I hope that surgery gets rid of your seizures, for the most part. If my condition gets worse I can probably find a cardiac surgeon to operate on my heart. The Cleveland Clinic does a good job. It can be brutal though for what I am seeking. Talked to one guy that had the surgery 6 times before it took care of the problem. Can your brain surgery be like that, and require surgery again later on to get more of the "bad" tissue?

Have you given serious consideration to the surgery? Of course any surgery is traumatizing for the body and for the psyche but it seems like the up side for you would be beyond worth it. It must be great to have 2 kids being straight A students, even if they just liked school that would be great also, mine are both still young, 5 and 2.5 yrs so we're not quite there yet.
Given that the first part of my procedure was a full scale mapping of my brain to detect dysfunctional tissue and they claim to have found all of it and removed the source of the seizures it is unlikely that there is any damaged tissue left. however that doesn't guarantee anything. The docs made certain that I understand that I'll be on some meds the rest of my life, just lower doses of certain ones and I'm off of Depakote completely and thank the lord because that shit was killing me. A second operation is unlikely given my chances of living seizure free being about 50-80%
Good talking brother, stay healthy and stay strong for yourself and your family!

 

[maldorf]

Have you given serious consideration to the surgery? Of course any surgery is traumatizing for the body and for the psyche but it seems like the up side for you would be beyond worth it. It must be great to have 2 kids being straight A students, even if they just liked school that would be great also, mine are both still young, 5 and 2.5 yrs so we're not quite there yet.
Given that the first part of my procedure was a full scale mapping of my brain to detect dysfunctional tissue and they claim to have found all of it and removed the source of the seizures it is unlikely that there is any damaged tissue left. however that doesn't guarantee anything. The docs made certain that I understand that I'll be on some meds the rest of my life, just lower doses of certain ones and I'm off of Depakote completely and thank the lord because that shit was killing me. A second operation is unlikely given my chances of living seizure free being about 50-80%
Good talking brother, stay healthy and stay strong for yourself and your family!

The surgery I would have, when they burn the parts of my heart that are misfiring, is very much like what they did to you. They have to map out my heart with electricity I think. Once they find the area they think is most probably responsible for my fibrillation they will destroy that. Problem is they have to trigger fibrillation in my heart to do it and there is a chance I wont survive that. Not sure how bad that risk is. Not only that, but he said because my problem is really fibrillation and not tachycardia it is much harder to get rid of all of the bad area and there is only about a 5% chance of success. I am pretty much fucked. The surgeon pretty much told me he would not operate on me. Guess the risk is too great vs reward chance.

I suppose if my problem gets worse and the drugs don't work so well anymore then I will have to have it, even though chances are just 5%. Think I mentioned earlier that one guy had it done 6 times and it finally worked. Not sure how his problem compared to mine. Mine is pretty damn bad. If the surgery didn't work and I continued to have issue I am not sure what they would want to do. Maybe a transplant, I don't know.

 

[method2madness]

The surgery I would have, when they burn the parts of my heart that are misfiring, is very much like what they did to you. They have to map out my heart with electricity I think. Once they find the area they think is most probably responsible for my fibrillation they will destroy that. Problem is they have to trigger fibrillation in my heart to do it and there is a chance I wont survive that. Not sure how bad that risk is. Not only that, but he said because my problem is really fibrillation and not tachycardia it is much harder to get rid of all of the bad area and there is only about a 5% chance of success. I am pretty much fucked. The surgeon pretty much told me he would not operate on me. Guess the risk is too great vs reward chance.

I suppose if my problem gets worse and the drugs don't work so well anymore then I will have to have it, even though chances are just 5%. Think I mentioned earlier that one guy had it done 6 times and it finally worked. Not sure how his problem compared to mine. Mine is pretty damn bad. If the surgery didn't work and I continued to have issue I am not sure what they would want to do. Maybe a transplant, I don't know.

Is your condition something you were born with? Or did something trigger your heart to have the problem it does?

 

[maldorf]

Is your condition something you were born with? Or did something trigger your heart to have the problem it does?

It is the result of the heart attack I had 8 years ago, the damage done then. Before that I was normal. I was only 38 yrs old. I attribute the heart attack to the combo of a blood clot disorder I have and my long use of steroids. of course I didn't know about the clotting disorder, nobody in my family had ever had an issue and we didn't know of its presence.

http://www.professionalmuscle.com/f...heart-attack-age-38-follow-up-phils-post.html

 

[method2madness]

It is the result of the heart attack I had 8 years ago, the damage done then. Before that I was normal. I was only 38 yrs old. I attribute the heart attack to the combo of a blood clot disorder I have and my long use of steroids. of course I didn't know about the clotting disorder, nobody in my family had ever had an issue and we didn't know of its presence.

http://www.professionalmuscle.com/f...heart-attack-age-38-follow-up-phils-post.html

I was unclear wether it was a result of your heart attack or a pre-existing thing that caused the heart attack. It seems likely that this may have happened regardless of the AAS. Did you discuss that with your Doc?

 

[maldorf]

I was unclear wether it was a result of your heart attack or a pre-existing thing that caused the heart attack. It seems likely that this may have happened regardless of the AAS. Did you discuss that with your Doc?

Yes, and they think it was the steroids too. I think if I hadn't ever taken them I would be fine. Both my mother and uncle have the trait and are 76 and 79 years old. Neither ever had an issue and we didn't even know it was in the family until me. I know many on here think I am just blaming my heart attack on steroids because I am looking for a scapegoat, but it just isn't so. You can choose to believe me or not to believe me. No use in me arguing, especially on this forum.