POTS might be caused by cfs leak?

[JasonUT]

Here is good presentation on CCI:
https://ehlers-danlos.com/2012-annual-conference-files/Durrani_EDS_talk_8-10-12_0.pdf

 

[JasonUT]

@Learner1 @Gingergrrl @jeff_w

Would an inflatable cervical traction device be helpful to differentiate CCI vs CSF Leak?

It seems that CCI could be relieved by inflatable cervical traction device per Jeff_w's site.

Is CCI positional in nature like a CSF Leak? Do CCI symptoms get relieved when lying completely flat on your back? Are CCI symptoms nearly non-existent after a good nights sleep and prior to getting out of bed? Does CCI cause late day headaches?

How would an inflatable cervical traction device affect CSF Leak?

 

[Learner1]

Seems like an upright MRI could distinguish the two. But, the symproms can be a little different. These two passages seem significant:

Because ICT is rarely available in typical hospitals, as an alternative a doctor may simply pull the patient’s head up off the spine in the doctor’s office. If there is a reduction in pain and symptoms, it confirms the diagnosis. Patients may also have an extreme worsening of symptoms if their head is pushed downward.

CCI also seems to happen in people with EDS or other connective tissue disorders.

A key characteristic of most of the above symptoms is that they are generally orthostatic. That is to say that they occur principally when standing, but are often significantly relieved, sometimes even relieved in their entirely, when lying down.

Symptoms may present themselves immediately upon sitting or standing, or increase gradually over a period of time. A common pattern with many CSF leak sufferers, particularly those with a small or intermittent spinal leak, is that symptoms may only become noticeable or severe later in the day.
...
The orthostatic characteristic is, however, a key indicator of a CSF leak and whenever this is present, a CSF leak should not be ruled out.

 

[Gingergrrl]

@Learner1 @Gingergrrl @jeff_w

Hi Jason, I am afraid I don't know the answers and don't want to steer you wrong but am tagging a few others who might have more to add @jeff_w @JenB @StarChild56 @mattie

 

[bombsh3ll]

I recently became interested in the possibility of a CSF leak as my onset began with a forceful valsalva on 4th August 2014 at 5pm. Yes, that precise. I am also diagnosed with hypermobile EDS which I pursued as a possible cause/contributor to my POTS.

I researched this and watched Dr Carroll's video, & I really thought this could be me. I have severe OI and cannot stand due to presyncope/syncope, and also have frequent severe headaches sitting which go away lying down.

I saw Dr Alok Tyagi in Glasgow who has published papers on CSF leaks and was familiar with the condition, knew of its increased prevalence in connective tissue disorders and its potential to be triggered by a valsalva. He was very good, very thorough, and arranged for me to have a full brain and spine supine MRI with contrast.

This is not the absolute most sensitive test as it can potentially miss small leaks, but it is non invasive and highly sensitive enough for me to be happy with. It was negative (I was sad about that as I so wanted something treatable). The next step would be a myelogram which we agreed was not indicated especially as with EDS that can actually cause a leak if you don't already have one.

I am however very glad that I ruled this out, especially as my next-but-one step is considering C0-2 fusion for cranial settling, so obviously want to do the least risky & expensive things first.

I would highly recommend anyone concerned about this to see a neurologist who specializes in this field and get it ruled out as treatment for those affected can have dramatically positive results.

B xxx

 

[JasonUT]

@bombsh3ll

I read that blind patches might be used diagnostically due to poor imaging sensitivity of MRI's for small, slow, or intermittent csf leaks. If the patient is responsive, even if only briefly, to blind patches then csf leak is still on the table and further work-up should be completed.

 

[bombsh3ll]

Thanks, I did consider blind patching but after seeing Dr Tyagi & going through my scan with him which was 3T & clear as a bell, I feel I have reasonably done enough to be satisfied that isn't my issue.

I am really glad I did explore it though.

B xxx

 

[bombsh3ll]

How would an inflatable cervical traction device affect CSF Leak?

It wouldn't help & could conceivably make things worse. If you suspect either problem, I really would not try anything like that at home, those things are designed for healthy people.

An upright positional MRI seems to be the standard for initial investigation of CCI (although I believe Dr Bolognese may now prefer supine) & a supine brain and whole spine with contrast is the initial investigation of choice for CSF leak.

I have had both. Conclusion - no sign of CSF leak (as well as looking for escape of contrast there are also characteristic signs on the brain, look up "SEEPS" I am not exactly sure what they stand for but there are 5 signs. Cranial settling aka vertical instability diagnosed by Dr Gilete.

B xxx

 

[JasonUT]

@bombshell

It's a double edged sword. I'm sure you hoped csf leak was the answer. On the other hand, after ruling this out, you can focus your attention, time, and precious energy elsewhere. I hope that you find answers some day.

 

[Inara]

It led to my getting IVIG and taking pyridostigmine and a beta blocker which have all helped.

I'm also taking IGG, and I started pyridostigmine which also helped for POTS. May I ask how much pyridostigmine did you take? And why would it help for autoimmune issues? It turns out I went into autoimmunity where there was none before. (And I had POTS before autoimmunity turned up.)