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@Derek1987 Did any of what the doc suggested, help? If so how have you improved?

@michele0209 did you ever find out what was causing this? I experience fatigue in my arms and legs as well.

@MomtoGiuliana I’ve had most blood work. Recently my vitamin D came back low so they started me on supplements. I think it’s from a lack of oxygen but not sure what’s causing it. Lung docs say I’m fine. Fludrocortisone put me into heart failure but once I stopped I’m not in it anymore. Cleveland Clinic swears I’m not in heart failure so now they are referring me to their autonomic guy there. I can’t see him until October though. It’s been almost 5 years and still no real answers. I’m exhausted 😞

Fair enough, @MikeO. One day there may be something similar that can be ordered by your doctor, like a Holter monitor, without the patient having to make a purchase.

Here you can see the monitor being worn by someone with POTS. (Click to enlarge.) The green top line shows cerebral blood flow trend, and the bottom blue line shows heart rate. Not sure what the black dots stand for. There are more graphs, with commentary, in the newsletter.

Not sure what is up but my email updates from stat went dead. to be honest i do not have faith in the product as to helping.

Two weeks have passed with no news on the date for my test. The stress of waiting to hear *whether* I can have it done has now given way to the stress of waiting to hear *when* I can have it done. Argh. Also I fear what ceasing all medications for two weeks prior is going to do to me and my household.

The latest newsletter has some info on release times later this year. March 2024 newsletter It also shows a couple of cerebral blood flow trend graphs. Boo hoo. It really brought it home to me how much I need this. See the heading “Stat data snippet from Shivani”. (My condition, like a few others, only shows up in cerebral blood flow. So right now I have nothing to measure, and neither does my doctor.)

following!

I’m going to be trying this (cautiously) to see whether it does anything to counteract my abnormal cerebral vasoconstriction. It works in a different way to the other things I’m currently taking. Will report back after I’ve given it a week.

I have never heard of this symptom related to dysautonomia. Could a nutritional deficiency be possible?

Hi everyone! Does anyone notice their fingernails curving downward when they grow out? I believe it’s from lack of oxygen but no one can tell me for sure or if it’s Dysautonomia related or something else. Does anyone else notice this? No clubbing, just curving down.

I don't have POTS but the seasonal allergy will provoke symptoms. Like you the fall and spring time is consistent times i need to be aware. I do become vasodilated during these times so i have assumed it is from producing a lot histamine. blowing my nose can cause me to pass out or go pre-sync. i have incorporated short runs of taking a antihistamine and seems to help. Good job on identifying your triggers and coming up with a plan to deal with them!

Grape seed extract very different than grapefruit seed extract. You mean the former for potential in dysautonomia

I also developed seasonal allergies for the first time after developing POTS in my early 20s. And my POTS, asthma, EDS, MCAS, anxiety / panic attacks, fatigue, and pain are all at their worst during the spring and fall allergy seasons. As others have also mentioned, as soon as I realized how the various body systems are intertwined, things started to make so much more sense!! Knowing what is happening in my body and having a protocol to follow really helps to decrease my anxiety and get me through the panic attacks a little better (typically my horrible asthma / MCAS attacks will turn into panic attacks). My current strategy is to: (1) avoid triggers as much as possible-- wearing a mask when outdoors or when I'm in a place that will trigger my allergies / MCAS (fragrances, dust, smoke, etc.) -- using an air filter inside -- I also just returned from a beach trip, where my allergies /asthma were all but gone (this has happened every time I'm there, and I'm glad our family vacation often coincides with the worst of the fall allergies where I live) (2) increase my allergy / mast cell medications-- Xyzal, Allegra, Cromolyn, Albuterol (as needed), and beginning to add more under my allergist's guidance, like compounded Benadryl and Pepcid and other prescription emergency meds. She has worked with me to create protocols for both maintenance and for the different levels of reactions I have. (3) nervous system work-- of everything, this has been the most beneficial across the board for all my conditions. It's one of the things that has really helped get my POTS under control over the last few years and helps decrease my panic response to symptoms when they come up. Specific to allergies, this can help by reducing the nervous system's response to stress (the allergens), aka, building resilience. And I've realized that working on any one condition will help all the others! Both by reducing the amount of total stress on my body, and because all the systems communicate with each other-- if one's freaking out, the others will too. And vice versa, any little thing we can do to better one condition can have a beneficial effect on the others.

@MarePar, best to phone and ask what the prep for the test is and which medications you can or can’t take.

I would def check with your drs on that one, I'm not certain but I would imagine since many people use benzos to treat their POTS and help manage their symptoms with them, I'd think it would stand to reason that taking the klonopin beforehand could probably mess with the results. Medical anxiety is awful, but the TTT also doesn't seem like the type of test you wanna have done in vain or have to do over a second time.. I'd double check with whatever office is administering your test and see what they recommend. And if they tell you that you do have to go into it without the meds, if you feel like you really need the answers from this TTT, you may have to try to mind-over-matter it to get through it, maybe close your eyes and go to your happy place til it's done. I don't know why medical testing has to be so traumatic so much of the time, there's gotta be better ways to get answers than half the stuff they put us through. But sometimes we have to get it done and allow ourselves time to recover from the experience and just hope that the results help guide treatment in the long run. Good luck!

Thanks! my appointment isn’t until 2pm so hopefully it’s not a long fast.

yes being fasted before the tilt table test is routine.

I have an appointment coming up to test for POTS. I have severe medical anxiety. Did anyone take Klonopin meds with the test? Was anyone advised on taking this med prior to the test? Was anyone advised on eating or drinking before the test?

Thank you all for sharing your symptoms and epiphanies! I have been trying on my own for so long to figure out all these weird symptoms I am having and my mind is very creative going to all these scary places that makes my heart race even more. I was close to going to the ER but now I will Try Claritin instead - fingers crossed! Wishing you all a hopefully calmer more symptom free allergy season as the last ones!

This is very intriguing! I might print this article for my primary neurologist. I had a VNG that detected a significant unilateral hupofunction (50%+). I have mild orthostatic tolerance issues, and orthostatic blood pressure issues.

I was going to say contacting patient relations but on facebook i see this all the time with Mayo and personally ran into the same scenario at UW madison.

@LHP, that’s frustrating. Can you contact the person who referred you? Or perhaps there is a patient liaison officer or similar who can help.

Hopefully someone w experience can answer your question but I wanted to refer you if not or if helpful to our physician list. There may be someone listed who would be helpful to you. I am unsure if Mayo would treat you or just do more testing, and if you are diagnosed, you do need treatment probably. https://www.dinet.org/physicians/