LDN after CCSVI venoplasty?

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LDN after CCSVI venoplasty?

Postby MegansMom » Wed Jul 20, 2011 7:07 am

Have any of you taken LDN after venoplasty? If so what is your experience ? Symptoms? MRI results? How much do you take and for how long? Any side effects? Cost?
Cat (Catherine Somerville on FB)
MegansMom
My 35 yo daughter is newly dx 8/19/10 (had 12 symptoms)
Dx with Type A CCSVI- 1 IJV & double "candy wrapper" appearance of her Azygos
Venoplasty done Sept 21, 2010
Doing extremely well-
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Postby questor » Wed Jul 20, 2011 8:38 am

I had treatment for CCSVI with stents, not angioplasty, stents were installed in both left and right IJVs at C1 level in September 2009. I had used 4.5mg LDN nightly for about 1 year before I went to Stanford, discontinuing it about 2 weeks prior to the procedure to prep for being anesthetized. My plan was to restart LDN again soon afterward.

I tried restarting 4.5mg LDN after the procedure, but always stopped again after one or two days because of an unpleasant return of bladder dysfunction and leakage.

I now use LDN at the 2.0mg level, have experimented several times with increasing dosage slowly, but bladder issues always keep me from continuing.

I guess I am one of the unlucky few who have spasticity related problems with LDN use (in my case these problems appear in the bladder and urethra). I'm not sure if I will ever be able to return to the 4.5mg level (unless I want to restart self-cathing, and wearing pads to protect myself from leakage).

It took me quite awhile to realize that the bladder benefits I had ascribed to the CCSVI procedure where most likely due to stopping LDN use at 4.5mg.

I am not getting the miraculous LDN stamina benefit at the 2.0mg level. I've always heard dosage needs to be in the 3.0mg-4.5mg range to get the maximum benefit. Hopefully I can get to at least the 3.0mg/nightly level with time.

--Tracy
CCSVI Procedure 9/16/2009 at Stanford
Stent in left and right IJVs
SPMS
Copaxone and Ampyra user
Botox Bladder Injections
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Postby munchkin » Fri Aug 19, 2011 6:10 am

Did you have bladder problems prior to started LDN?

Kim
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Postby questor » Fri Aug 19, 2011 8:26 am

munchkin wrote:Did you have bladder problems prior to started LDN?

Yes, definitely, but these problems were aggravated by LDN. Same with night time spasticity in the lower legs. I've finally stopped using LDN entirely because of these problems.

Retention is still a problem. but I get-by using manual pressure to empty my bladder, and I still have the occasional accident if I can't make it to the john in time. But, while using LDN I had to self-cath several times a week, and I had constant bladder leakage (bi-weekly ear-acupuncture helped mitigate this for me, but I'd rather not deal with it at all). This went on for an entire year without lessening. I thought it was solely due to MS, and didn't realize that LDN was aggravating this problem.

I stopped using LDN in advance of the 2009 CCSVI stent procedure, and assumed the sudden lessening of spasticity was due to the IJV correction. With hindsight, I think this was primarily due to stopping LDN.

I've tried reducing the dose to as low as 1.0mg nightly, and it doesn't help enough for me to continue using it. I've had nights that required 12+ trips to the head, but without LDN, I typically get up about 3 times. The LDN benefit WAS NOT worth the side-effects, and the side-effects DID NOT lessen with time, thank you very much.

--Tracy
Last edited by questor on Wed Aug 31, 2011 2:38 pm, edited 2 times in total.
CCSVI Procedure 9/16/2009 at Stanford
Stent in left and right IJVs
SPMS
Copaxone and Ampyra user
Botox Bladder Injections
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Postby munchkin » Fri Aug 19, 2011 9:01 am

Thanks for the information.
I was considering trying LDN but I already have bladder and spasticity (sp) issues. it seems these are common issues with LDN so I'm rethinking this option. I have been hearing about botox for the bladder and will be looking into that a bit.

Kim
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Postby Thekla » Fri Aug 19, 2011 2:03 pm

This is fascinating. I have taken LDN for years. Initially at 3.5-3.75mg (it eliminated my L'Ehrmittes) then after a few years, I increased to 4.5mg without spasticity issues. I was treated for ccsvi in Aug 2010 and reduced my dosage afterwards because of sleep issues. I was just retreated in July and once again went back on my LDN but at 4.0mg. My bladder has been improved since July although I still wear pads. I seem to be going less frequently in general but I have still been getting up a couple of times each night.

Last night, I skipped my LDN because I suspected it was waking me up, not my bladder. I slept better and only got up once around 5am, but I think that was because my back was hurting and I needed to move. It never crossed my mind that the LDN and bladder spasticity could be connected. I'm going to try this for a week and see what happens. My bladder has been distinctly better during the day. hmmm


eta: initially LDN helped some with bladder issues too
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Postby leetz » Sat Aug 20, 2011 6:37 pm

hello...i try to stay on the lower end of LDN...between 1.5mg and 2.5mg...anything higher gives major spasticity problems...presently i take 2.5 mg...think i am gonna go back down to 2mgs...
GOD BLESS.... CCSVI treatment Dr. Siskin great doc....symptom's improved for about 3 week's (gait, balance, spasticity) now back to square 1...
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Postby Thekla » Wed Aug 24, 2011 2:19 am

I am sleeping much better without. I was having so much pain that it was driving me from my bed in the morning. It seems that the LDN has some totally different effects after proper bloodflow is restored---I had 80% blockages in both IJVs. Spasticity is much less and only occasional nighttime bathroom trips. My bladder is still not normal, but.....

I had been taking 4.0mg after instead of my normal 4.5mg because I expected sleep disturbances now, I'm questioning using it at all.
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Postby CD » Fri Aug 26, 2011 8:31 pm

Hi Thekla,
I have found that it was hard getting back on LDN after my CCSVI procedure. I keep getting spasms in my feet and calves during my wakeful sleep, which was so much better after the procedure.

I have been waking up too many times in the night to go to the bathroom for bladder purposes too. In the day, it is normal. Hmm Why am getting up more often I wonder?

I am taking 3.0 mg LDN, but less seemed better 1.5 mg. Maybe I don't need it either since my procedure, I don't know. I have urgency, frequency and hesitancy, no leakage.

My Neuro gives me the script and said why not take it during the day? I used to get it from PCP but my Neuro wrote it for me, which was odd.

I don't know if taking it in the day will make a difference. My Neuro is very new to this drug.

Has anyone ever done it this way? Take LDN in the morning, yet sleep at night?
CD
Where there is a will, there is a way. "HOPE"

CCSVI Procedure December 2010
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Postby Thekla » Thu Sep 01, 2011 11:40 am

I have heard of some taking it in the morning instead of at night. I tend to think that a reduced dose at night might be better, but I haven't tried it yet. I do notice that I'm sleeping better at night but if I get up in the night, I don't walk as well as I did with LDN. I used to actually get some lift in both legs. I wear a walkaid during the day, so this was noticeable at 3am! It was the best walking I did in 24 hrs.
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Re: LDN after CCSVI venoplasty?

Postby Thekla » Tue Sep 06, 2011 10:24 am

I wrote to Dr Gilhooly at the Essential Health Clinic about this since he has been very involved with LDN research and more recently, CCSVI. He agreed that a lower dose and taking it in the morning instead of at night were my best options. He suggested dropping to 2mg and then slowly increasing but in the am!

He also thought it was a good sign. He thinks the CCSVI treatment has probably resulted in an indirect reduction in immune activity and therefore my sensitivity to the drug has increased. I am glad mornings are an option. I really didn't want to have to drop it.
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Re: LDN after CCSVI venoplasty?

Postby CD » Tue Sep 06, 2011 6:55 pm

Hi Thekla,
I'm glad you found that out, good news thanks. I thought my Neuro was not on the same page with me when she suggested that I take it in the morning. I plan to try that. I have been on a lower dosage now, lower than before CCSVI.

I do find it helps with many odd aches and pains, not all MS related. Also the extra endorphins just seem to keep me in a good mood all the time. :-D
Where there is a will, there is a way. "HOPE"

CCSVI Procedure December 2010
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