POTS might be caused by cfs leak?

JasonUT

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@Gingergrrl I agree and I also think there are multiple causes of POTS. Unfortunately, this makes it incredibly hard to find root cause for each suffering patient. It's usually up to the very sick patient to advocate for a detailed work up on all these different and complex root cause possibilities.

I'm currently working on it from three angles:
  1. Autoimmune. Unfortunately, Dr Vernino declined my referral and did not give a reason.
  2. Genetics through Baylor college of medicine in Houston
  3. And now I'm just starting this SIH and cfs leak theory.
 

Learner1

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Any doctor can order tests. It can be more important to get a rest run than to have a specialist order it. I, too, have bern turned down by specialists, and though I eventually found a couple who helped, I found getting tests run in rhe meantime that I could take them hastened my trajectory to getting treated.

The hot topic at the recent dysautonomia conferences has been autoimmunity. So, its a good place to look if you have ruled out a mechanical problem.

Getting this test run might be useful.

https://www.celltrend.de/pots-cfs-me-crps.html

I had blood drawn in California, then sent to Germany. They sent me a bill which i paid online before they sent the results. Any doctor can order it if they can follow directions for taking the blood. It led to my getting IVIG and taking pyridostigmine and a beta blocker which have all helped.

I also had this set of tests done by a dysautonomia specialist, a neurologist. They are designed to figure out what is not working properly:

https://www.neuroassociates.us/autonomic-test-preparations.html
 

Learner1

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I will also say that I have a friend who developed several small CSF leaks. They did not have the correct equipment here in Seattle and she was incorrectly diagnosed wiyh brain cancer. She eventually went to Mayo in Minnesota and they had the correct imaging equipment and were able to perform surgery to correct the problem and has improved dramatically.
 

JasonUT

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@Learner1 Thanks for the info. I have had this autonomic test done. I only failed the heads up tilt heart rate with 60 to 125 bpm increase.

I also had the Mayo DYS1 testing done twice. N-Type Calcium Channel Ab came back slightly positive. It was designed by Dr. Steven Vernino. Unfortunately, Vernino declined my referral without explanation. I did 4 IVIG sessions and got aseptic meningitis so IVIG got put on hold for now.

I'll need to add the Cell trend test to my To Do List.
 

JasonUT

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I will also say that I have a friend who developed several small CSF leaks. They did not have the correct equipment here in Seattle and she was incorrectly diagnosed wiyh brain cancer. She eventually went to Mayo in Minnesota and they had the correct imaging equipment and were able to perform surgery to correct the problem and has improved dramatically.
It sounds like Mayo, Cedars-Sinai, Stanford, and Duke are the the top places for CFS leak work-up.
 

JasonUT

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It led to my getting IVIG and taking pyridostigmine and a beta blocker which have all helped.
I'm quite frustrated with my reactions to the usual POTS treatments:
  1. Florinef - Boosted blood pressure and gave me 10% boost in health. It seems to give me some depression and weird mental thoughts if my dosage is too high. I am currently testing 0.10 mg to 0.15 mg. I can't decide on the best dosage.
  2. Pyridostimgmine - No response. Nothing positive and nothing negative
  3. Midodrine - Currently, testing 2.5 mg TID and it has actually lowered my BP by 10 points down to 100/60. This makes absolutely no sense to me. I thought Midodrine was supposed to increase blood pressure. I am usually 110/70 to 120/80 with florinef.
  4. Propranolol - Very strange feeling when I was on this. I can't describe it in words, but I didn't like it and this trial proceeded my current POTS crash. I may try it again in the future, but skeptical at the moment.
  5. IVIG - Aseptic Meningitis
 

Gingergrrl

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@Gingergrrl I agree and I also think there are multiple causes of POTS. Unfortunately, this makes it incredibly hard to find root cause for each suffering patient. It's usually up to the very sick patient to advocate for a detailed work up on all these different and complex root cause possibilities.
I agree it is extremely frustrating and the first two Cardios I saw in 2013 & 2014 were not even familiar enough with POTS to diagnose it at all. I initially had incorrect diagnoses of IST (inappropriate sinus tachycardia) and then microvascular angina.

Autoimmune. Unfortunately, Dr Vernino declined my referral and did not give a reason.
This is such a bummer and I am upset to learn this and it is not even my appt! I was really hopeful that you would see Dr. Vernino and he would tell you the root cause of Autoimmune POTS (and you would tell me what you'd learned :nerd:) ... Can you find out WHY they declined your referral? Do you know if it's clinical vs. insurance reasons?

The hot topic at the recent dysautonomia conferences has been autoimmunity.
That's my understanding as well and there seems to be a huge autoimmune component in Dysautonomia. Our doctor feels that autoimmune dysautonomia is the core of my illness. I really wanted to go to the Dysautonomia International conference in July but I cannot afford it. Maybe next year :)

I also had this set of tests done by a dysautonomia specialist, a neurologist. They are designed to figure out what is not working properly:
https://www.neuroassociates.us/autonomic-test-preparations.html
I looked at your link and it looks phenomenal! That is amazing to have a center like that in your city. I had the same battery of four tests at Stanford's Dysautonomia Clinic but it was a very bad experience (but it did confirm that I had severe POTS and it is how I learned that I was positive for two autoantibodies on the Mayo Panels).

I will also say that I have a friend who developed several small CSF leaks. They did not have the correct equipment here in Seattle and she was incorrectly diagnosed wiyh brain cancer.
:eek:

I also had the Mayo DYS1 testing done twice. N-Type Calcium Channel Ab came back slightly positive. It was designed by Dr. Steven Vernino. Unfortunately, Vernino declined my referral without explanation.
You were higher on the N-type CA+ Channel Ab than I was and I think it is more significant than your doctors are recognizing. That's part of why I was so curious what Dr. Vernino was going to tell you. I would also be very curious which autoantibodies you are positive for with Cell Trend (b/c they have some tests that are specific for POTS).

It sounds like Mayo, Cedars-Sinai, Stanford, and Duke are the the top places for CFS leak work-up.
I cannot speak for Mayo or Duke but I have been to Stanford and Cedars and had a bad experience with both (although Cedars was not for autonomic testing vs. another issue). I can tell you more via PM in the future if it would be useful. If you can't see Dr. Vernino, what about Dr. Jill Schofield in Colorado?

I did not tolerate Florinef whatsoever (in 2014) and it made zero improvement in my POTS and gave me severe headaches.

This was even worse (later in 2014) and gave me respiratory depression.

Midodrine - Currently, testing 2.5 mg TID and it has actually lowered my BP by 10 points down to 100/60. This makes absolutely no sense to me. I thought Midodrine was supposed to increase blood pressure. I am usually 110/70 to 120/80 with florinef.
Midodrine helped me (and I still take it) but when I was really bad (also in 2014 & 2015), it often lowered my BP, just like happened to you, which was so bizarre. And my BP was 80/50 to start with :yuck: (at that time, not now). The reason I stuck with it was b/c it improved my breathing (at that time) and my docs thought that it was raising my core BP, through preferential perfusion, even though not raising it enough to show on an arm cuff, so I was getting some increased perfusion to my lungs and heart.

I have never taken Propranolol but do very well with Atenolol. I wonder if you would do better w/it b/c it is a cardio-selective beta blocker? It doesn't treat the root cause but definitely lowered the tachycardia (for me).

I did very well w/IVIG but made all kinds of modifications like super slow infusion speed in a 3-day split dose, etc. But I did not get remission from POTS until Rituximab (which was further evidence in my case that I had Autoimmune POTS).
 
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Learner1

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I only failed the heads up tilt heart rate with 60 to 125 bpm increase
That is the only one I failed, too. Atvtge time, I thought it might not be good enough, but the dysautonomia specialist took it quote seriously and seemed satisfied he's figured out what was going on. He commented that I had hypoperfusion in my brain causing me to pass out on the tilt test. And the meds he has prescribed have dramatically helped.

Pyridostimgmine - No response. Nothing positive and nothing negative
This has made a huge difference in my functioning. I'd guess that your response may differ due to the combination of antibodies you have. In my case, I seem to need an increase in acetylcholine, which is what it does. Maybe you don't.

Propranolol - Very strange feeling when I was on this. I can't describe it in words, but I didn't like it and this trial proceeded my current POTS crash. I may try it again in the future, but skeptical at the moment.
I have been on several medications that affect blood pressure, including ACE inhibitors, ARBs, carvedilol, carbidopa, and toprol XL. Propranolol helped for awhile, but it stopped working. Some raised or lowered BP and some raised or lowered heart rate. Keep trying til you find something that works.
IVIG - Aseptic Meningitis
I was in the ER with aseptic meningitis after my secind dose. I know a patient with permanent damage from high dose IVIG given without any support medications, like steroids.

The doctor Gingergrrl and i go to has a lot of sensitive patients and he has come up with a custom plan for each of us to tolerate IVIG. In my case, I get Solumedrol, Benadryl, Toradol, and Ativan before the IVIG, more Benadryl during, then dexamethasone, more Benadryl, and Zofran for up to 3 days after. This is in line with what the ER did when i went in - tbry gave me IV dexamethasone, Toradol, and benadryl and i learned i needed to stay ahead of the symptoms. I've been on IVIG for 18 months and over time, it has greatly helped me.

Best wishes...;)
 

JasonUT

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Does anyone get teeth pain, facial pain, facial tingling, scalp tingling, pressure or fullness in ear(s) after standing for a period of time? Do all these symptoms subside after laying down for 30 minutes?
 

Learner1

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No. That sounds like a set of symptoms worth pursuing a structural problem with your spine and how it connects to your skull. A physiatrist, DO, or neurologist might be useful. Have you checked out Jeff_w's story?
 

JasonUT

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I am trying to find a differential diagnosis symptoms for POTS vs. CSF Leak.

The following symptoms are very common in CSF Leak and positional in nature: teeth pain, facial pain, facial tingling, scalp tingling, pressure or fullness in ear(s). However, I don't hear these symptoms listed or referenced for POTS. I am trying to pursue a proper work-up for CSF Leak.

https://spinalcsfleak.org/about-spinal-csf-leaks/symptoms/
https://www.csfleak.info/what-is-a-cerebrospinal-fluid-csf-leak/csf-leak-symptoms/
https://www.inspire.com/groups/spinal-csf-leak/discussion/anyone-with-horrible-teeth-pain-throbbing/
 

JasonUT

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No. That sounds like a set of symptoms worth pursuing a structural problem with your spine and how it connects to your skull. A physiatrist, DO, or neurologist might be useful. Have you checked out Jeff_w's story?
I am not familiar with Jeff_w's story. Where can I find it?
 

JasonUT

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@Gingergrrl @Learner1 @jeff_w

Fascinating. CCI and CSF Leak have very similar symptoms. It seems both could cause sagging and brainstem compression. How would you differentiate the two? I have a cervical and brain MRI, but I am laying flat.

CCI:
http://thezebranetwork.org/craniocervical-instability
http://www.thepainrelieffoundation.com/craniocervical-instability/

CSF Leak:
https://www.csfleak.info/downloads/download-info/upright-headache-think-csf-leak-pdf/
https://www.csfleak.info/what-is-a-cerebrospinal-fluid-csf-leak/csf-leak-symptoms/