CCSVI, LDN and post-treatment meds

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby girlgeek33 » Tue Aug 31, 2010 9:08 pm

CureIous wrote:
Thanks for the comprehensive, well thought out info and links. Well done. Good to see you back here also.

Mark.


Thanks, good to be back among the living! ;)
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Postby ErikaSlovakia » Wed Sep 01, 2010 12:13 am

vivavie wrote:Does LDN helps with neurophatic pain? I take a LOT of pain killers without any relief at all.

Hi Vivavie!
My neuropathic pain started in 2005 - in my right arm. Doctors tested all possible painkillers on me - zero effect. Since 2007 I had been taking 1200 mg of Carbamazepin a day. It took me about 3 months to get used to it but since that time my neuropathic pain was under control.
I had my procedure in November 2009 (one stent in left jugular). I was able to take less Carbamazepin after 5 months. When I was 8 months after the procedure I stopped with Carbamazepin (it means 2 months ago). The cruel pain is still gone. I do not understand why.
I started with LDN in November 2008 and I still take it. It did not help with my nerve pain.
I still have the same problem with fatigue and sleepiness as before the procedure but it is much better than without LDN.
Carbamazepin are pills - not expensive in my country and I was lucky that my health insurance company paid for it.
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Postby girlgeek33 » Wed Sep 01, 2010 6:09 am

ErikaSlovakia wrote:Hi Vivavie!
My neuropathic pain started in 2005 - in my right arm. Doctors tested all possible painkillers on me - zero effect. Since 2007 I had been taking 1200 mg of Carbamazepin a day. It took me about 3 months to get used to it but since that time my neuropathic pain was under control.

Carbamazepin are pills - not expensive in my country and I was lucky that my health insurance company paid for it.
Erika


Oh I remember being on that stuff, tegretol is another name for it. Nasty stuff! Knocked me out 12 hours at a clip! Thankfully I was only on it for just under 4 months. But I do recall being able to tolerate it better after a couple of months. It worked very well on the pain! So, in that regard, worth being knocked out! My pain was from shingles, rare syndrome of it in which my facial nerve line was impacted (never get anything normal!). The pain was awful! Felt like I had been hit upside the head with a baseball bat, had a vicious ear infection, like every tooth had an exposed nerve, couldn't feel my chin, lips or tongue. But this is so off topic...

I have often wondered, since MS pain isn't the type of pain that has a real causation (meaning like an injury), why do they prescribe pain killers that do work on site based pain. MS pain tends to lean on the brain telling the body there is pain where there is no reason to have pain. From what I recall of understanding the pain I was feeling in shingles, it is the brain telling the body there is pain, that shouldn't be there, so normal pain killers wouldn't work. So I always wondered why they wouldn't prescribe something like tegretol that deals with this type of pain so well for MS as it seems this is the same as the pain in shingles. The two types of pain, injury vs. Shingles/MS, have different mechanisms in the body. But, it wasn't that long ago that many neuros claimed pain had no basis in symptomology of MS. How wrong they always seem to be, always saying something cant be MS and then it becomes widely accepted as MS....
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Postby girlgeek33 » Wed Sep 01, 2010 6:10 am

ErikaSlovakia wrote:Hi Vivavie!
My neuropathic pain started in 2005 - in my right arm. Doctors tested all possible painkillers on me - zero effect. Since 2007 I had been taking 1200 mg of Carbamazepin a day. It took me about 3 months to get used to it but since that time my neuropathic pain was under control.

Carbamazepin are pills - not expensive in my country and I was lucky that my health insurance company paid for it.
Erika


Oh I remember being on that stuff, tegretol is another name for it. Nasty stuff! Knocked me out 12 hours at a clip! Thankfully I was only on it for just under 4 months. But I do recall being able to tolerate it better after a couple of months. It worked very well on the pain! So, in that regard, worth being knocked out! My pain was from shingles, rare syndrome of it in which my facial nerve line was impacted (never get anything normal!). The pain was awful! Felt like I had been hit upside the head with a baseball bat, had a vicious ear infection, like every tooth had an exposed nerve, couldn't feel my chin, lips or tongue. But this is so off topic...

I have often wondered, since MS pain isn't the type of pain that has a real causation (meaning like an injury), why do they prescribe pain killers that do work on site based pain. MS pain tends to lean on the brain telling the body there is pain where there is no reason to have pain. From what I recall of understanding the pain I was feeling in shingles, it is the brain telling the body there is pain, that shouldn't be there, so normal pain killers wouldn't work. So I always wondered why they wouldn't prescribe something like tegretol that deals with this type of pain so well for MS as it seems this is the same as the pain in shingles. The two types of pain, injury vs. Shingles/MS, have different mechanisms in the body. But, it wasn't that long ago that many neuros claimed pain had no basis in symptomology of MS. How wrong they always seem to be, always saying something cant be MS and then it becomes widely accepted as MS....
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Postby acol » Wed Sep 01, 2010 6:31 am

Dealing with MS pain is tricky. I find it very difficult to articulate my nerve pain. I think the best description is a feeling of an electric current being passed through my body - feeling the affect mainly in the shoulders, back and legs. It makes me want to hunch my shoulders in order to give me a temporary respite. If I am lying down I have to get up and vigouressly rub my skin in order to alleviate the pain. I have found that Tramacet does help a little. It is certainly not the solution but it quite often makes the pain more bearable.

Getting some prescriptions for pain control is not likely to get any easier because of the need for cost-cutting. With this in mind I have found this link as a possible insurance against a refusal to renew my prescription for Tramacet. http://www.patient.co.uk/health/Neuropathic-Pain.htm

In truth, neither neurologists or doctors have much understanding of MS related pain. They don't suffer from MS and yet they think they know all there is to know about the condition!
Nigel
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Postby vivavie » Wed Sep 01, 2010 6:48 am

Thank you Geekgirl for taking the time to answer me.
Before my neuro agreed to send me to the pain clinic (2 years wait list - Canada is a banana republic!!!) he tried every pills in his book: tegretol, neurontin, tegretol, elavil, cymbalta and more and more. I lived through all the side effects and the adjustement periods for my body!!! Nothing works because as you mentionned it is a faulty signal send from my brain; there is NO injury in my feet and legs. Pain 24/7/365 days + Fatigue is hell for me and for others around me as it changes the emotionnal stability...

This is why I am wondering about the impact of LDN on neurophatic pain?
Anyone with success using it for that? From what I gather it helps more on energy - even that would be good.
I have to go on the black market for it. I need to be sure before.

Thank you all for sharing:-)))
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Postby ErikaSlovakia » Wed Sep 01, 2010 6:50 am

girlgeek33 wrote:Oh I remember being on that stuff, tegretol is another name for it. Nasty stuff! Knocked me out 12 hours at a clip!


Yes, exactly!
It is also called Tegretol or Timonil in my country and yes it knocked me out for at least 12 hours. It was really bad the first 3 months.
I slowly got used to it. However I am really happy I do not have to take it anymore.
But the pain was just HORRIBLE! I was biting my own arm so it was full of bruises. Piece of frozen gel helped as well but just for a short time.
Those almost 2 years were simply a nightmare.
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Postby vivavie » Wed Sep 01, 2010 6:55 am

Oupssss! I missed a couple of posts of page 1! my mistake sorry about that! my inbox stent me directly on page 2:(
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Postby girlgeek33 » Wed Sep 01, 2010 7:18 am

I do have some pain from the MS. Still have it, but not all the time, and frequently go long periods without any of this pain. Long ago, my neuro actually prescribed anti depressants for this pain. Said it was the same functioning in the brain, or dysfunction. I actually don't recall how well it worked on the pain. I couldn't stand the side effects of the drug. I felt so numb to everything, I couldn't stand it! I have a fairly high pain threshold, so I decided to go it without meds. Then a few years later, found LDN. The frequency I felt the pain was minimal after being on LDN. Only felt it during flareups, and it still wasn't consistent. This pain has always felt like it was down in my bones and then radiated out. Come on strong and then go away. In my extremities only...
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Postby adamt » Thu Sep 02, 2010 10:21 am

Hi,
Ive been taking 2mg LDN every night for the last 2 and a half years.

My symptoms - mobility - legs strength/balance, bladder, stiffness) have not got any worse sine Jan 2008

Before LDN i gradually got worse.


I had my balloon angio 2 weeks ago, and continue to take LDN, i didnt realise it was advised to stop

I was only ever given Apirin, which is still take 75mg daily for the next 5 months


But i think i have restenosed, 2 weeks after liberation


Does anyone think this could of been because i continued taking LDN?
Is it advised to stop when i get treated again?

thanks
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Postby girlgeek33 » Tue Sep 07, 2010 3:41 am

adamt wrote:Hi,

I had my balloon angio 2 weeks ago, and continue to take LDN, i didnt realise it was advised to stop



But i think i have restenosed, 2 weeks after liberation


Does anyone think this could of been because i continued taking LDN?
Is it advised to stop when i get treated again?

thanks


No, restenosis would have nothing to do with LDN. The recommendation to stop is because of LDN interfering with opiate based medications given to you during or after your procedure, naltrexone is an opiate blocker. So, in order to allow those meds to work properly during your procedure, go off LDN for at least a day prior to procedure. If you are given an opiate based pain meeds post procedure, you can time when you take LDN, to allow for when you take pain meds. But, even if you take both, you will be fine. Check out some of my earlier posts on this thread for more info...

Sorry to hear you had restenosed. I hope the next procedure does the trick!
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Postby girlgeek33 » Tue Sep 07, 2010 3:42 am

adamt wrote:Hi,

I had my balloon angio 2 weeks ago, and continue to take LDN, i didnt realise it was advised to stop



But i think i have restenosed, 2 weeks after liberation


Does anyone think this could of been because i continued taking LDN?
Is it advised to stop when i get treated again?

thanks


No, restenosis would have nothing to do with LDN. The recommendation to stop is because of LDN interfering with opiate based medications given to you during or after your procedure, naltrexone is an opiate blocker. So, in order to allow those meds to work properly during your procedure, go off LDN for at least a day prior to procedure. If you are given an opiate based pain meeds post procedure, you can time when you take LDN, to allow for when you take pain meds. But, even if you take both, you will be fine. Check out some of my earlier posts on this thread for more info...

Sorry to hear you had restenosed. I hope the next procedure does the trick!
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