Kellysavedbygrace

Yes, I also get these and I agree they are adrenaline surges. My doctor helped me understand them by explaining that normal people while sleeping also have a release of adrenaline which is gradual and begins somewhere around 2am. In a normal person the very slow release of adrenaline over the course of several hours is what helps a person wake up gently around 7am.

For those of us w POTS our dysregulated system doesn't release the adrenaline gradually- I dumps all at once like a dump truck manufacturing this "trauma" that makes us wakeup in a panic with palpitations and a feeling of fear.

I get them during the day too at times when I'm really symptomatic.

Edin, you are on the right track and planning for you will be important. Money, transportation, etc. Are just some of the obstacles- the key is doing the research and then figuring out the how. Sounds like your mom is supportive of you researching so I'd encourage you to look into both funding with local, state and federal sources. (u can usually find this info in the front section of the phone book.) as well as the right docs/ tests for you and keep her informed (maybe even put in writing) about what you learn/find. That way she can have time to review the info and plan too.

As a mom myself, if I know my son/daughter has invested time and effort researching something then I'm much more likely to support it.

As for funding sources, I'd go down the list of agencies in the phone book one by one- any that seem relevant, such as health, travel related. Call them, explain your situation and ask if they have any services that might help you.

You have described to a t how I have felt so many times. I used to worry that I would stop breathing but it's happened so many times I realize it is just part of the Dysautonomia. Shortness of breath is my scariest symptom.

I wish I could tell you about some technique I've found that works but I have not found one. I have noticed the more symptomatic I am, the more likely I am to have that "I've forgotten how to breath" sensation.

Rich, thank you. That was so helpful. So if my serum NE levels were abnormal (high) on tilt I would be considered hyper POTS? What is the other type?

I had blood volume testing done at Cleveland Clinic in OH with Dr. Jaeger. My results showed normal volume levels but severe blood pooling. Dr. Jaeger thought the Fludrocortisone still in my system impacted the result. I am quite confident despite the result that I am chronically hypovolemic because dehydration is a huge trigger for me and saline via IV helps me through rough patches. I've used it as a "bail out" now on several occasions.

I'm not sure what is required for ordering the test but I would suspect anyone with syncope related issues might benefit. When I called up there to set up the appt for "autonomic testing" this was one of several tests they scheduled for me. The others were: lots of blood work, QSART, TTT (wCatecholamine serum draw on request), Hemodynamic lab(this was the most helpful for me), HR Variability. I was supposed to have the Thermoregulatory Sweat Test but couldn't get in due to scheduling.

I'm not sure which facilities have that test but here are a few that might:

- Mayo, MN

- Vanderbilt, TN

- NY Univ Med Center Langone, NY

- UT Southwestern, TX

I am considering a trip to Vandy too. I'd love to hear how it goes. I'm looking at going as a research Pt.

I agree w ramakentesh that BP is not a good measure for most of us but the increased plasma volume helps w symptoms.

In Hemodynamic lab at Cleveland Clinic my total cardiac output decreased by 42% on sitting upright. There was no change in my BP. That is crazy and doesn't make sense.

I've found the saline to be useful when I'm having a bad flare. Wouldn't want it as a regular Rx. I'm actually going in today and Fri for more. Seems to help relieve symptoms temporarily. Good note about checking temp of saline.

That is really interesting. I know so little about Polio. Wonder if there could be a connection.

I live in Spanx.

I have been wearing them daily since December even through the heat here in Florida. I try not to

leave the house w/o them on because I am much more symptomatic without them. (especially faint). I do not wear them when in bed.

I tried stockings but found that my feet/legs kept falling to sleep in them. I understand we actually have more capillaries in our splancnic bed (abdominal area) than in our legs and blood pooling is really bad for me. (At Cleveland Clinic they said I pool 37% of my total blood volume going from supine to sitting- creating a 42% reduction in cardiac output- no wonder I'm faint.)

I was initially worried too about breathing because shortness of breath is a big issue for me but I have not noticed a change. I do have a lot of the gastric motility too but didn't connect it to Spanx- you may be right. Seems it was bad for me before. I definitely spend more time in the bathroom dealing w either constipation or loose stools multiple times a day. Gastroparesis is also an issue for me. But I've found the digestive issues to be less problematic than the faint, fatigue, hypersensitivity and near deficit issues. I too have to be careful putting them on/off as I've pulled muscles in my thumb and fingers.

I get the blurry /fuzzy vision as a part of my symptoms and a low fever sometimes. (99.5). But those symptoms are nothing compared to the faintness, fatigue, hypersensitivity, parasthesia and neuro deficits when I'm have a bad POTS spell.

I have had two really bad flares:

1- following a root canal

2- following getting a filling done.

Arizona girl, I love your response. It focuses on the positive and opens up the door to talk more if the other person wants. I might try that response next time. TY

This NET topic is one I've been interested to understand but this thread and even links are way beyond my level of comprehension. Can someone help me understand this at a milk and cookies level?

When I went to Cleveland clinic they noted my NE was elevated upon upright tilt. I got weak and started to faint so the TTT was stopped- my NE was up to almost 800. Does that related?

Thx Kimbell for sharing that link. Excellent!

This is a great topic for discussion because we all struggle with this.

I laugh and tell them my husband and I have a new saying, "It's better to look good than to feel good.".

Or

"Thank you, just hearing that makes me feel a little bit better."

Edin, good for you for reaching out about this. I've had a recent relapse which has made me feel so alone and I can relate to what you are going through. Here are a few ideas that come to mind:

1. Exercise - I know this is different for everyone but make sure you are doing something regularly to reverse deconditioning. I spent so many months in bed and then heard about dr. Ben Levine's exercise study for POTS pts out of Dallas. In March I forced myself to go to cardiac rehab with all the older folks. At first I couldn't drive myself and I had to rely on my mom and others for rides. Most days I'd have to wear sunglasses and earplugs and it was a pitiful start. But now I'm able to drive myself most days and I bring the sunglasses w me and only wear them occasionally. I was discharged from cardiac rehab and I now work out with a trainer. I'm still doing almost all recumbent but the exercise has been a huge help in my progress. Note- many days I still come home and have to recover from the exercise but I am spending less total time in bed playing video games and watching Netflix.

2. Create a routine for yourself that involves learning and renewing your mind. Watch educational videos such as those on Khan Academy or healthy cooking/ cleaning videos so you can learn new ways to do things for yourself. I'm 42 and last fall while in bed a took a Biology course online and downloaded the latest edition of the Primer on Autonomic Nervous System on my computer. I'm still trying to understand what I'm reading but the challenge helps me keep my mind working. Of course I only have the capacity to do that on good days- but on bad days I have a rule for myself that I watch one educational video before watching a movie or TV show. Also, I've started the one year bible reading plan - don't know what your faith is but find something that lifts you spiritually too.

3. Make a list of the things that you can do for yourself- such as bathe, get up to make a bowl of cereal etc. And then make a list of five things you'd like to add to that list to become more independent by the end of the year. Then work on your list. I've found just having a goal, even if I don't reach it helps me to at least move forward.

God bless you.

3.

Thank you for sharing. My doc had mentioned this coming out and I appreciate the update!

Thank you to all of you for replying. It helps me to realize I'm not so alone.

It is interesting that during the dental procedure last year they used Lidocaine w epi in my upper left jaw. My chart has already been flagged with no epi so the dentist used Mevapicaine without epi this time in my lower left jaw. It makes me wonder if I would have a nerve block to the right side would I have a similar reaction? The ER doc suggested to consider a different class of local anesthetic such as Ether. Have any of you had Ether?

My symptoms have continued to worsen since my last posting (all POTS related: severe fatigue, near blackouts, bilateral parasthesia, shortness of breath, unusually high tachy, etc. ) Today in addition my doc started me on IV saline therapy. I hope the hydration will help.

Any suggestions for future dental work? and/or do any of you know of studies done with POTS patients related to dental work?

Tingling, numbness spreading gradually across the face then up the neck, head, up the back (like icy spiders) and down the arm(s) / leg(s). Followed by severe episodes of pre syncope.

I had an acute onset of POTS and NMS following a root canal (left upper) last August.

The day after the root canal I had tingling and numbness in the left side of my face as is if the anesthesia was wearing off a second time. The next day I had the same sensations on the right side. The next day in my feet, then up my legs, arms, back and neck. Then came the waves of faintness and palpitations that landed me in the hospital. This is how my Dysautonomia journey began.

This past Monday I went in to have a filling done (lower left - my first work since the root canal) and ended up in the ER last night with a similar set of symptoms:

-tingling and numbness on left side of face and left side of chin, moving up my neck, back head and down my arms. Palpitations have begun. All seems to be unilateral this time.

My primary wanted to rule out stroke and my autonomic specialist recommended a steroid pack to reduce inflammation in the event of a rare allergic reaction. We ruled out stroke and I'm now on a steroid pack.

My docs are puzzled so I'm wondering if any of you have insights into this weird repeat reaction.

The sympathetic nervous system is designed to gradually release very small amounts of adrenaline starting around 1-2 am that allow the normal person to awaken gradually. For us, because our ANS is disregulated, we get an adrenaline dump so we wake up running from that tiger with palpitations, etc.

I have this prob too- every 1.5-2 hrs. One of my docs says we have to get my nervous system to gradually relax. Not sure how. Am interested in the earlier comments about getting off BB and onto SSRI. Might consult my doc about that idea.

My morning cocktail is:

High ball glass with a heavily salted rim (with organic sea salt)

8oz of V8

it gives me almost 1 gram of salt first thing in the morn.

I was just drinking my my morning cocktail and wondered what tips, tricks and ideas you have for getting salt in. My goal is to get 6-7 grams a day. I've tried the salt tabs but have difficulty taking them. Would love to hear what you do.

I agree with several here that being near docs who specialize in Dysautonomia is key. It'd be a perk if you were within a reasonable distance to your family and an autonomic testing center.

Also, If you end up near Vandy it is not too far a drive to Pensacola, FL. where Dr. Charles "Randy" Thompson is. He is one of my docs and would be wonderful to follow with.

I'm glad your hubby has been diagnosed. God bless.

Ssri took away my night symptoms.

I'm on an SNRI yet I still get similar night probs like Ldaisy. Any chance you have experienced both SNRI and SSRI? If so, what differences, if any, did you experience?

my ears are definitely involved. I had the caloric test (hot and cold air put through ears) and it showed a weakness of like 80%. So I had significant weakness, due to what? they don't know.

I will be reading these articles this weekend!

Thank you for posting this.

i had a similar result and response from my ENT. severe electrochochlear abnormality and minor hearing loss in the right ear. I've also had constant ringing in my ears since onset last fall. funny that the ENT didn't recommend treatment or next steps. Ive wondered many times what the connection is but have been so focused on other issues such as BP/HR stability that I haven't focused on these ear issues.

I'm not a doctor but from Pt to Pt it sounds like many POTS symptoms to me. You may already know this but clinically it is the presentation of an Orthostatic HR increase of 30 bpm and symptoms for 6mos.

In POTS the sympathetic nervous system does not function properly so upon standing/ or sometimes even sitting the blood vessels, especially in the splancnic bed (gut) and lower extremities do not vaso constrict the way they are supposed to. Therefore the systemic blood flow is reduced and the HR increases trying to compensate. This of course creates a myriad of problems known as the "S" of POTS-Syndrome. The syndrome includes many symptoms including migraines, sleep disorder, anxiety/depression, irritable bowel syndrome IBS, tear duct dysfunction, salivary gland dysfunction, temperature disregulation, tinnitus, hyper mobility joint disorders, etc. POTS patients may present with all or any combo of these but 99.9% of all POTS patients present with overwhelming fatigue.

I too was told I had anxiety and almost everyone here can relate to the difficulty of diagnosis. Although I have both POTS and NMS I have many symptoms that are not fully explained by these two dysautonomias so I'm working with docs to both try and treat what we know and further diagnose the unexplained symptoms.

I agree with Lilly, you are in the right place. Welcome.

I'm headed to CC in two weeks to see Dr. Jaeger and have autonomic testing for 3 days as an outpatient. During this visit I am scheduled to have the QSART, repeat TTT, Hemodynamic Lab work - under fluoroscope, heart rate variability test, and syncope test. I called In November to make this appt. At the same time I called Dr. Grubb's office. That would have been a one year wait so I opted for CC. I'm not sure if Dr. Grubb has a full autonomic lab but I understand from Dr. Randy Thompson in Pensacola there are 5 Autonomic labs well known in the country (not in order) are:

- Mayo, MN

- Cleveland Clinic, OH

- Vanderbilt, TN

- Southwestern, TX

- ??????? - Dr. Kauffman, NY (specializing in PAF/MSA)

I'll try and post an update following my visit to CC.