CNS compression / stretching -> calcium influx in neurons -> possible treatment = calcium channel blockers

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Around 30 minutes in, Henderson explains how stretching of the spinal cord or brain stem could cause CNS dysfunction. Such stretching can be a result of various structural anomalies, such as: CCI, spinal stenosis, basilar invagination, cranial settling, etc. It seems that when neurons are subjected to stretching forces they take in excessive amounts of calcium.

I did some more research and found this study:

https://www.ncbi.nlm.nih.gov/pubmed/16503803

In this study, primary cortical neurons were cultured on an elastic substrate and subjected to graded levels (0%, 10%, 30%, 50%) of either uniaxial (cells stretched in one direction only) or biaxial (cells simultaneously stretched in two directions) stretch. We found that neurons stretched in either injury paradigm exhibited immediate increases in intracellular free calcium ([Ca2+]i), but the magnitude of the ([Ca2+]i) rise was nearly an order of magnitude higher in biaxially stretched neurons compared to uniaxially stretched neurons. Moreover, while the ([Ca2+]i) transient after uniaxial stretch was blocked with specific channel antagonists (APV, CNQX, nimodipine, TTX), a substantial ([Ca2+]i) transient persisted in biaxially stretched neurons.
I also found this article:

https://www.healthrising.org/blog/2...l-blocker-fibromyalgia-chronic-fatigue-pt-ii/

Other practitioners, such as Jay Goldstein, also trialed nimodipine with patients, but if a positive response was not seen immediately, they did not continue the trial. Goldstein rated nimodipine the third best of his top 23 drugs for ME/CFS.
Based on the above it is possible that nimodipine could help CCI sufferers. Furthermore it is possible that people who have been diagnosed with CFS and respond well to nimodipine might be misdiagnosed and suffer from a structural problem instead.
 

rel8ted

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Furthermore it is possible that people who have been diagnosed with CFS and respond well to nimodipine might be misdiagnosed and suffer from a structural problem instead
As we have seen with @mattie @StarChild56 @jeff_w @JenB ans others, there is certainly the possibility of structural problems. The question is, to what degree.

Although it would be great to be able to treat said structural problem with meds vs surgery, I would think it would be important to be evaluated by a neurosurgeon to assess the extent of the problem, especially in the presence of EDS.
 

pattismith

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Thank you for this video, Nimodipine has been discussed several times on PR, it is interesting to have a new insight about it.
The Ehlers Danlos syndrome seems to teach us a lot about possible general structural causes of CFS, although we have to keep in mind that people who don't have the EDS can too suffer with all kind of structural myelopathies that are more commonly seen in the EDS.
RA and SA especially can be associated with these structural changes, but also spondylosis, some spinal tumors...and probably other causes...
 

Sushi

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Henderson explains how stretching of the spinal cord or brain stem could cause CNS dysfunction. Such stretching can be a result of various structural anomalies, such as: CCI, spinal stenosis, basilar invagination, cranial settling, etc. It seems that when neurons are subjected to stretching forces they take in excessive amounts of calcium.
All this made me very cautious when approaching surgery where intubation was necessary—particularly as I believe @JenB’s neck was stretched too much during intubation.
 

Hip

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Based on the above it is possible that nimodipine could help CCI sufferers. Furthermore it is possible that people who have been diagnosed with CFS and respond well to nimodipine might be misdiagnosed and suffer from a structural problem instead.
That's a very interesting thought.

Also in this 2014 Henderson video at 12:41 he says that stretching the nerve leads to calcium influx, which is very harmful to that nerve.

Dr David Mason Brown says nimodipine helps 20% of ME/CFS patients very quickly, and another 20% over six months.

The Mason Brown protocol begins with a quarter of tablet (7.5 mg) of nimodipine per day with food. Then you slowly increase the dosage by a quarter of a 30 mg tablet each week, up to a maximum dose of four tablets per day (taken in divided doses). It is important to drink 8 glasses of water each day. Ref: here.

Some patients find nimodipine lowers blood pressure, so have to cease taking it. Ref: 1

Nimodipine has many drug interactions.
 
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Hip

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Looks like the supplement N-acetyl-cysteine (NAC) and the drug probenecid helps prevent neuronal death after stretch injury in vitro, by preserving intracellular levels of glutathione. The study authors say these results may extrapolate to in vivo as well.
 

Gingergrrl

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Such stretching can be a result of various structural anomalies, such as: CCI, spinal stenosis, basilar invagination, cranial settling, etc. It seems that when neurons are subjected to stretching forces they take in excessive amounts of calcium.
@borko2100 @Hip or anyone reading :)

Can someone explain the connection between these various neck issues and calcium? Could this relate in any way with having calcium channel autoantibodies?

I remember JenB talking about her neck being stretched too much from surgical intubation (as Sushi mentioned above) and, on a much lesser scale, this happened to my neck today when getting my hair dyed/washed at a salon which I only do twice per year b/c it exacerbates my neck pain so much that it is not worth it.

I never thought there was any connection to calcium but it seems like everywhere I turn, there is some new article or connection with calcium! Except in my case, I am to avoid calcium channel blockers (CCB’s) and NOT take them which seems to be the opposite of this research?

Thx in advance for any info!
 
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@Gingergrrl

If you suffer from CCI it can cause the spinal cord or brain stem to stretch beyond its normal limits. Note how the cord on the right is much longer (pathological):

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In some studies they have found that when nerve cells are stretched like that they take in more calcium than normal. This increase in calcium could possibily cause the cells to dysfunction. That's why I hypothesise that reducing the calcium in those cells with a calcium channel blocker might help.
 

Gingergrrl

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If you suffer from CCI it can cause the spinal cord or brain stem to stretch beyond its normal limits. Note how the cord on the right is much longer (pathological):
In some studies they have found that when nerve cells are stretched like that they take in more calcium than normal. This increase in calcium could possibily cause the cells to dysfunction. That's why I hypothesise that reducing the calcium in those cells with a calcium channel blocker might help.
Thank you for explaining that and it appears to be the opposite mechanism of my own case (where too little calcium is going into the cells b/c it is being blocked by an autoantibody). I did a (supine) cervical MRI last year which did not show CCI which also matches with that I do not have too much calcium per your theory (and that my severe, chronic neck pain is from another patho-mechanism).
 
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This is a very interesting thread for me, and I'm so glad that somebody is bringing this issue up to the attention.

I have described my surprising and dramatic reaction to Cinnarizine (Stugeron) which is an antihistamine and calcium channel blocker, used to treat vertigo and motion sickness (also used to treat cerebral hypoxia) in this thread.
I've been taking cinnarizine for a month now and although I'm not feeling normal yet, most of my symptoms described here are gone. Although I don't feel normal yet, yesterday I went to spend the afternoon in a shopping centre with a friend, walking around like a normal person. There are still some sensations in my body that are weird though, generally feeling fatigued, and I'm really trying to understand how this calcium channel blocker is working on me.

Before taking it, I was suffering from debilitating nausea, dizzyness, back pain, initially also headache and neck stiffness. I had difficulty breathing and palpitations, but I think that was because my veins and arteries around my lungs and heart were too constricted. I've also had a weird pinched nerve on my left hip, which always made me think of a structural problem. So I wonder if this whole nerve strain thing could be a link...
 

valentinelynx

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All this made me very cautious when approaching surgery where intubation was necessary—particularly as I believe @JenB’s neck was stretched too much during intubation.
I would guess that @JenB's extra neck stretch resulted not so much from the intubation but from positioning for thyroid surgery. It's common to place a rolled towel behind the upper back/lower neck to provide extra extension of the neck during this kind of surgery. This would put the neck in extension for a prolonged period of time, which could be problematic in patients with CCI or other neck problems. While the extension of intubation can also be a problem, it is brief, unlike the positioning for thyroid surgery.
 
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@GloriaDG

Gloria, I'm glad you have found a drug that helps you. I read your introductory thread and several symptoms that you described are red flags for a structural problem:

A feeling of pressure and heaviness in my head. Sometimes ear pain, tinnitus, feeling my heartbeat in my ears, occasionally even teeth pain
All of those are very often associated with chiari, intracranial hypertension, CCI, etc.

I've noticed that this and the sore throat tend to appear when I flex my head forward while lying down... I think.
JenB had a similar problem, turning her head sideways would make her symptoms worse.

And then a weid one: nerve pain (burning, tingling) on my left hip.
Nerve pain that is unilateral is often due to myelopathy of the spinal cord (stenosis, bulging disc, etc.).

You've had a brain MRI. However I would advise that you send it to a CCI specialist for further evaluation, since most radiologist are not well trained to recognize CCI. Also if your problem is cervical spinal stenosis, it would be missed on a brain MRI, you need a neck MRI to rule that out. Good luck.
 
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@borko2100

Thank you for replying. Yes, structural issues have always been an option in my mind. The symptoms that you mentioned are a red flag as you say, but oddly they've also gonne after taking cinnarizine (apart from nerve hip and heaviness of eyes and head). And I have the feeling as if I keep improving. That's why I'm glad that you opened this thread to connect the two things together, as I couldn't find a link. But now that I've seen this video from Handerson it kinda makes sense. In fact, most people that suffer from vertigo/dizziness also have cervical issues and drugs like cinnarizine are apparently prescribed for these issues (it's cinnarizine first use).

If I really had a structural issue in my spine it's amazing how a calcium channel blocker could make all symptoms disappear, also the back pain! However, I haven't been diagnosed with these issues and I don't have neck pain, which seems to be an important symptom for Handerson.

I've read a lot about Nimopidine, but what I find odd is the fact that it's not really curative and patients have to keep on taking it in order to prevent symptoms from coming back. Could this mean that they actually have an underlying structural issue that needs to be addressed in order to resolve symptoms definitely?

Cinnarizine is sold by the name Stugeron and in the UK is sold behind the counter without prescription. It would be interesting to see how a diagnosed CCI patient in the UK reacted to this med, which is easily accessible there, and see what happens...
 
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@borko2100

Cinnarizine is sold by the name Stugeron and in the UK is sold behind the counter without prescription. It would be interesting to see how a diagnosed CCI patient in the UK reacted to this med, which is easily accessible there, and see what happens...
Yes I agree. It would be very interesting for people diagnosed with CCI to experiment with Nimodipine or Cinnarizine. It should be pretty safe to try if done carefully. I might try it myself as Cinnarizine is prescription free here.

Finally, could you try discontinuing the drug for a few days to see if symptoms come back? Placebo responses or spontanous improvements due to unknown factors are quite common with this disease.
 
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Yes I agree. It would be very interesting for people diagnosed with CCI to experiment with Nimodipine or Cinnarizine. It should be pretty safe to try if done carefully. I might try it myself as Cinnarizine is prescription free here.
Cinnarizine is pretty safe, I also bought it prescription free in Singapore airport before boarding my flight. People that go sailing use it a lot apparently. The only thing is, as Gingergirrl says above, it is counter intuitive for people who has diagnosed POTS, so that would be the warning in my opinion. However, I thought I had POTS too, but apparently that's not what it was.

Finally, could you try discontinuing the drug for a few days to see if symptoms come back? Placebo responses or spontanous improvements due to unknown factors are quite common with this disease.
I haven't tried recently, but I did try about a month ago when I had just started taking it. Initially, just half a pill was enough to make me feel much better. This would last for a couple of days. Once, I didn't take it at the end of the second day, and on the morning of the third day my symptoms reappeared with vengeance, I would say. I got a sudden severe headache and therefore I took another whole pill. The symptoms went away within a couple of hours. So it's definitely not placebo. I'm now on three whole 25 mg tablets per day, suggested by my doctor (this is the dosage used in the treatment of migraine - cinnarizine is used for that too).