Some random questions

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Some random questions

Postby PleaseHelp » Thu Apr 27, 2017 7:51 pm

Hope I don't annoy you already with my questions, but most of you have already knowledge (more than my doc) and I really appreciate the advices.

Got a "stop" from healing now since 4,5 Month I guess. So there must be some parts I need to change I think.

1. I often take the medicaments (Gabapentin) not in the right distances of the Day. Sometimes there are 12hours without anything because I get late to sleep, sleep till midday etc.
Does this really make a huge difference?

2. All I do i laying in my Bed, laying on the couch, sitting on my seat ring when I eat. I don't do any type of sport of fitness. I don't even go for a small walk.
Does that maybe mean all my muscles and tissues get harden because there is no movement there? Also I lay with ben knees so the pressure is on my tail bone, this isn't good too, right?

3. I eat only bad things. And I eat with big time differences too, sometimes the whole day nothing and then a lot. But I don't really eat healthy.
Is eathing healthy really that important for the Nerve? Is it really required for Nerve healing?


4. Medicaments are the same since beginning but I don't feel any difference the last 4-5 Months. Gabapentin and Saroten. Gabapentin 3600/day and Saroten 80mg/Day - Saroten up to 80 in the last 2 Months - no difference - so is it necessary that i take them further? (Sure I dont do anything on my own). But I think it is not helping so why should I continues with them and don't change to Lyrica or another Antidepressant? Most people tried a lot of different medicaments, so I think this should have done by me too... Any advices on that?

5. Next step according to my Neurologist is Infiltration. I will go to Dr. Bodner in Vienna. Now I am thinking about Infiltration or Nerve block. Should Infiltration be the first? I would prefer Nerve block because that sounds to me more like a long term affect... Any tips on this?

6. When I stretch my legs I feel exactly that something in the tissue is going apart. (It is like a stiff neck - when you put it to the left and right you feel how the tissue is going loose again)
Does anyone else feel the same? For me it sounds like Entrapment and I should do everyday exercises, take a walk etc.


Thanks for all the help i got till now and hopefully get further : ) - you are awesome people!
PleaseHelp
 
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Re: Some random questions

Postby Violet M » Fri Apr 28, 2017 5:00 am

1. The half life of gabapentin is 5-7 hours and it takes 2 days for it to get out of your body. How fast your body uses it may depend on your age and how fast your kidneys clear it out. So, ideally if you want to maintain a certain level of it you would probably need to take it 3 times a day as typically prescribed but it may not make a huge difference if you go a few hours over. The important thing is not to quit taking it suddenly because that could cause seizures. You should wean off of it slowly.
http://www.rxlist.com/neurontin-drug/in ... dosage.htm
http://www.rxlist.com/neurontin-drug/cl ... cology.htm

2. Your muscles will atrophy somewhat if you don't use them but I'm sure you get up and walk around a little bit during the day so you aren't going to completely lose function of them. I laid around on the couch for 2 years and I was OK afterward. I wasn't in great shape but I was OK. Putting pressure on your tailbone would be a problem if you did it so much you got bed sores (open wounds). Then you would have to change positions, of course. For elderly people who are bed bound it is recommended to change positions at least every 2 hours to prevent bed sores.

3. Eating healthy is important for prevention of many diseases, not just to maintain healthy nerves. But often it takes many years of unhealthy eating before these diseases catch up to you. It would also take time before you noticed a difference if you changed to a healthy diet.

4. If those 2 drugs help then there's no reason to switch to something else. If they aren't helping then it would be worth it to switch. How a drug affects you may not be the same as how it affects someone else so there can be some trial and error in figuring out which drugs work for you. Check out the following link for ideas:
http://www.pudendalhope.info/node/20

5. What do you mean by infiltrations. What kind of infiltrations?

6. It depends. If it's a stiff muscle then stretching is good. If it's an entrapment with a nerve squished between two ligaments then stretching can cause damage.

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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Re: Some random questions

Postby PleaseHelp » Fri Apr 28, 2017 10:08 am

Thank you for your detailed answer !! That's really kind of you, like always

But it looks like that there is nothing I did extremely wrong so that the cure "stops" :/

About the Infiltration: It would be an Infiltration with Cortison and Botox

My doctor said that the Infiltration could possibly be "the step" to cure it completely.

My options left are:
- Physical therapy
- Infiltration
- Nerve block
- Painkillers (opiates and morphine
- Operation
- Cryoablation (read something about that lately and that it has a good quote)

Do you think there is a good chance to get better with some of them? Because there are a lot I didn't try yet.
I mean at the moment I only got these 2 medicaments..
I really keep on loosing hope about that all and feel suicidal...
PleaseHelp
 
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Re: Some random questions

Postby Violet M » Sun Apr 30, 2017 5:13 am

Well, I understand your fear and despair because I have been through the same thing but I have a great life now and I'm glad I did not give up. I always tell people who are on the verge of giving up that it would not make sense to quit when you still have options available to you and some of them might prove to be really helpful. If your thoughts of despair are overwhelming then you should seek professional help.

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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Re: Some random questions

Postby PleaseHelp » Mon May 01, 2017 1:00 am

Before I didn't try everything I will not give up for sure. As long as there are therapy methods I will keep up a little bit hope.

But I don't get it why I still don't get painkillers till today and most of the people here got them after 1/2 year or a year. I am damned to live in total pain meanwhile.

I had a permanent cure since the start. A "stop" since a few months and suddenly about 3-4 days ago it went so much worse like in the beginning phase... That made me crazy!

So I got me some Oxycodon 40mg retard from friends and tried them - because I kept loosing hope that something works.

And thank god it helped. Actually it helped a lot! So for now I know there are at least Opioids that will work when everything else fails.

That made me happy like nothing else in the past moths : )
PleaseHelp
 
Posts: 43
Joined: Thu Feb 23, 2017 10:41 pm

Re: Some random questions

Postby Violet M » Tue May 02, 2017 5:17 am

Well, it is not always easy getting opioids. If you can find a good pain medicine doctor who will prescribe them for you that would be helpful. But opioids are not a permanent solution because you can develop a tolerance to them. I used to take them just in the evening/night so I could sleep a little bit and I did not take the extended release opioids because I did not want to develop a tolerance to them. If you can find a doctor who knows how to prescribe suboxone that might be a good one to try because it has naloxone it it which helps to prevent you from developing a tolerance to the drug.

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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Violet M
 
Posts: 5464
Joined: Mon Sep 06, 2010 6:04 am
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