jayut

I was having a lot of cardio-like symptoms: Large variability in blood pressure, palpitations, PVC's, and arrhythmias. Magnesium is a natural calcium channel blocker. I started with 100 mg per day and worked up to 100 mg TID over 3-4 weeks. I use Mg Glycinate. It's the only form I can tolerate. It has worked wonders for me. My heart hasn't felt so calm in years. Mg has a ton of other benefits and it's GABA-like properties help with anxiety and stress. As a matter of fact, I had a much better response to Mg than Beta Blockers.

I trialed Midodrine and it didn't do anything positive or negative.

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

Another study linking cfs leak and POTS. https://journals.sagepub.com/doi/full/10.1177/2515816318773774

Cfs leak Q and A with Dr. Schievink. https://www.csfleak.info/what-is-a-cerebrospinal-fluid-csf-leak/csf-leak-questions-and-answers-schievink/

SIH and cfs myths. https://www.ncbi.nlm.nih.gov/m/pubmed/29797515/

Also according to Dr. Kranz video. Imaging becomes less reliable the longer the leak had existed. https://spinalcsfleak.org/symposia/symposium-2018/ Upon reflection, I first started having orthostatic headaches in 1997 after injuring my lower back while working out. It became full blown disabling POTS after another back injury in 2014. Could I have had some low level leak since 1997?

Fresh off the presses. Dated May 22, 2019. https://www.ncbi.nlm.nih.gov/m/pubmed/31118385/

It is my understanding that MRI for cfs leak is very specific but has incredibly poor sensitivity. https://spinalcsfleak.org/about-spinal-csf-leaks/diagnosis/

Had anyone out there with pots later discovered they have a cfs leak? What happened? Did the cfs leak get treated? Did pots symptoms resolve?

@Alan-pots-IST This is an extremely old post, but I am curious what happened with your ALA experience? What form and brand did you take? I am going to try ALA 600 mg + NAC 1200 mg

Effects of intermittent intravenous saline infusions in patients with medication-refractory postural tachycardia syndrome. https://www.ncbi.nlm.nih.gov/pubmed/28185102

My nervous system seems hyper sensitive to just about everything. It's so frustrating. Light, sound, smells, taste, positional changes in posture, etc, etc. I don't know if EMF bothers me, but I am taking a cautious approach and trying to reduce and/or eliminate as much as possible. Unfortunately, I feel like this could be psychologically counterproductive. I already feel like a hypochondriac and have enough stress in my life. Do I need to add new one? Heart rate variability affected by radiofrequency electromagnetic field in adolescent studentswww.ncbi.nlm.nih.gov/pubmed/29469164Analysis of the mobile phone effect on the heart rate variability by using the largest Lyapunov exponentwww.ncbi.nlm.nih.gov/pubmed/20703598Electromagnetic fields produced by GSM cellular phones and heart rate variabilitywww.ncbi.nlm.nih.gov/pubmed/17004239Effects of electromagnetic field exposure on the heart: a systematic review.www.ncbi.nlm.nih.gov/pubmed/24021427

I also started testing Mg Glycinate 1.5 weeks ago. I slowly titrated from 100 mg to 100 mg 4x over the 1.5 weeks. My initial response seems very positive. Heart palpitations are down, my BP is slightly lower, but extremely stable at 115/75. I also noticed that my heart rate doesn't jump as high. It used to jump from 60 to 120+, but now it seems slightly calmer at 60 to 90+. Additionally, I noticed my pulse pressure width is much more stable. It used to vary from 40 to 60, but now seems a very stable 40-45. Also, I don't feel like my chest is going to explode from the heart beats. I feel much calmer and more relaxed. To be honest, 1.5 weeks is far to early to give a true conclusion. I find I have to test something for at least 1-3 months before I can make an honest conclusion. https://www.ncbi.nlm.nih.gov/books/NBK507250/ https://www.ncbi.nlm.nih.gov/pubmed/10454449/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5452159/

All great ideas. We did chase the initial IVIG with Saline, but I don't know how much. Also, I did stay very well hydrated before, during and after IVIG. We didn't try a slower infusion rate. The nurse kept checking my HR and BP during infusion and everything was great so they kept their standard infusion rate. It is odd that I didn't get the aseptic meninigitus until 1.5 weeks later. RX doc said he had never seen or heard of delayed aseptic meningitis and thought this was extremely strange. It took almost 2 weeks of Tylenol, Advil, and Prednisone to get the aseptic meningitis knocked down. It was terrible. It all escalated on Oct 31, Halloween. My daughters first Halloween to dress-up and she was old enough to be aware of what was happening. I ended up spending the night on the phone with the on-call doc trying to figure out what was happening and why my temperature was 104F. I hate when this illness gets in the way of some of the special moments. My current doc seems extremely cautious after my aseptic meningitis complication. As a result, he is trying to refer me to Dr. Steven Vernino. It's my understanding that Dr. Vernino helped design the Mayo DYS1 test. I hope this referral goes through.

@p8d Thanks for the update. Please continue to provide updates. This seems very encouraging for you and gives me hope. Shotgunning by adding a few other folks with very old auto-immune history. @HyperPOTS8 @Natops @Miqual @diabeticgonewild @Shellee

I found the following on the Mayo Site for DYS1 test. Interpretation Antibodies directed at onconeural proteins shared by neurons, muscle, and glia are valuable serological markers of a patient's immune response to cancer. These autoantibodies are not found in healthy subjects, and are usually accompanied by subacute neurological symptoms and signs. It is not uncommon for more than 1 autoantibody to be detected in patients with autoimmune dysautonomia. These include: -Plasma membrane cation channel antibodies (neuronal ganglionic [alpha-3] and muscle [alpha-1] acetylcholine receptor; neuronal calcium channel N-type or P/Q-type, and neuronal voltage-gated potassium channel antibodies). All of these autoantibodies are potential effectors of autonomic dysfunction. -Antineuronal nuclear autoantibody-type 1 -Neuronal and muscle cytoplasmic antibodies (CRMP-5 IgG, glutamic acid decarboxylase and striational) A rising autoantibody titer in previously seropositive patients suggests cancer recurrence. Cautions Negative results do not exclude autoimmune dysautonomia or cancer.

Hello, My doc ordered the Mayo Panel around August of 2017. My results were: Positive N-Type Calcium Channel ab = 0.10 (Normal < 0.03) Positive Neuronal K+ Channel ab = 0.07 (Normal < 0.02) As a result, I was diagnosed with LEMS and completed a trial of 4 IVIG infusions in late Oct 2017. I then got aseptic meningitis 1.5 weeks after the last IVIG infusion. We hit the breaks hard and never followed up with IVIG therapy or IVIG boosters. However, in hindsight, December, January, and February were the best months I have had in 5 years. Makes me think that maybe the IVIG did have a positive affect. I crashed hard in late February and ran another Mayo Dysautonomia Panel 3 weeks ago. Unsurprisingly, the results came back as follows: Positive N-Type Calcium Channel ab = 0.51 (Normal < 0.03) Positive Neuronal K+ Channel ab = 0.03 (Normal < 0.02) Now I am completely perplexed. Doc appears to be on the fence and is not sure if this a true or false positive. A part of me wonders if he is nervous, because of my aseptic meningitis complication. Can anyone provide some advice or thoughts? What should I fight for?

I recommend doing a search on pubmed for emf, wifi, rf etc. It's a bit scary how much comes up. If you haven't already, please read the articles in the OP. Unfortunately, I personally know 3 people affected with electrical hypersensitivity. All three engineers. Two have a PhD and one with masters degree. They are very smart people. I have an electrical engineering degree. I understand electricity. What I don't completely understand is the affect of massive cumulative and chronic exposure to all this new non-ionizing rf and emf at a biological level. This new technology is all in addition to the naturally occurring emf and rf created. What's the cumulative and chronic affect? Is it just enough to make for slight malfunction for those genetically or biologically predisposed? Are some of us the canaries in the coal mine when it comes to man-made rf and emf?

The thought of electrical hypersensitivity sickness scares me. I have a friend who is affected and she had to move out into the country in a small trailer. I've installed some emi filters this week and this friend is coming on Friday with all her fancy measuring gadgets to inspect my house.

I have been doing some research and it appears that EMF and Dirty Electricity has a direct affect on VGCC. We know that VGCC auto-antibodies create VGCC dysfunction and can cause dysautonomia. Therefore, is it reasonable to hypothesis that EMF and Dirty Electricity may be contributing to or exacerbating dysautonomia via effects on VGCC? EMF effects on VGCC: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3780531/ Calcium Channel Blockers seem to block the effects of EMF on VGCC: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3780531/ However, Rx calcium channel blockers seem counterproductive for POTS: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4517341/ Magnesium is a natural Calcium Channel Blocker: https://onlinelibrary.wiley.com/doi/full/10.1111/j.1751-7176.2011.00538.x "Oral magnesium acts as a natural calcium channel blocker, increases nitric oxide, improves endothelial dysfunction, and induces direct and indirect vasodilation.” Here is a very old dinet topic on Magnesium: I am starting with 120 mg Mg Glycinate BID and working-up slowly. Also, trying to make changes in my home to reduce EMF. What do you think?

I have, but the one I saw didn't seem to have a clue about gastroparesis and dysautonomia. He wanted to do a colonscopy, but I declined. For some reason, it didn't make sense in my head.

Just got back from ER. They gave me 2 liters of saline. It didn't seem to help like it had in the past. It seems like my worst symptoms are extremely low appetite and naseua. I try to eat but it just leads to naseua and I vomit if I eat too much. I've lost 15 lbs in the last 6 weeks. This seems excessive considering I'm 5'11" male now weighting 130 lbs.

Yes, I am lucky. He is very patient with me and is willing to try. I have had 32 doctors before him that gave up on me.

I'm a people pleaser. It's so difficult for me to say "NO" Good to know about the high BP. I'm glad to know I'm not alone. I feel like my nervous system is struggling to find homeostasis. The slightest misstep and it goes back onto chaos and my symptoms go through the rough.