Jump to content

Starting the Journey to Find Out What Type & Cause of Dysautonomia I have. Any experiences with UT Southwestern (Vernino)?


Recommended Posts

Greetings. I am now into 6 wks since things suddenly began going downhill for me quickly, and so far all I know is I have some form on autonomic dysfunction. I was recovering from a June eye surgery and after I ran out of painkillers and still being in pain, I started drinking alcohol throughout the day for 3 wks (barley every drank before). I was also dealing with increasing insomnia and taking high dose ambien to sleep. Out of the blue 6 weeks ago, my face and lips had sudden burning sensation. Took Benadryl and went away in a couple hours. Later the same week, the same thing happened. I wondered if it was related to the alcohol and stopped drinking.

 

That's when things went really crazy: burning sensation spread from face to upper chest and upper arms, urinating every 45min, felt dizzy and lightheaded, tremendous heart palpitations. Sudden body shaking without fever, but periodic low fevers during day as well. Ended up in ER and BP was 197/101 and heart rate was uneven on EKG (always have been normal on both up to now). COVID was negative (repeatedly). They got my BP down to 157 and released me not knowing what was going on. Symptoms continued. As soon as I would eat or drink anything hot, my BP would soar from 140/80 to 170/100+. Next week went to primary dr and when I got there I passed out and was taken by ambulance to Hospital. They recorded temp of 100.7 but again COVID negative. Admitted for 4 days and tons of tests. They noted on brain MRI that I had very small strokes from BP but that they were so small they would not be causing my symptoms. Only other thing that showed anything was elevated lactic acid (acidosis), which quickly normalized. It was also noted I had been taking 4 weeks of a Fluoroquinolone antibiotic (moxifloxacin) and those have a very rare effect of peripheral neuropathy.

 

The initial though was alcohol withdrawal, but didn't make sense to the doctors given the short time drinking and sudden onset of symptoms. Since then, my symptoms have gotten somewhat better. Still having tingling feeling in upper lip, periodic burning sensations in upper arms (only when sitting or lying down), BP tends to remain high despite BP meds but doctor is nervous to try anything else because my BP can swing quite a bit: when I'm lying down it tends to be high 140 - 160, sitting up more like 130 - 140, and standing it starts dropping slowly but continuously. One time, came inside from 1hr yard work and was dizzy and BP had fallen to 77/60 (from 118/90 when I went outside). Have had several instances of this. My heart will easily race as soon as I start moving around. My resting in first few weeks was 100+. Now my resting is more normal 75 -85, but if I walk fast on treadmill or do any active work, my pulse will stay in 90's for the entire rest of day. Also have constipation since hospital and reduced sweating on chest and abs.

 

Seen a ton of specialists already. Generally thoughts are either 1) I am somehow uniquely sensitive to alcohol or the antibiotic and have nerve damage or 2) some form of auto-immune disorder. Rheumatologist was very interested in this because I had many years ago had cosmetic silicone injections and there is some thought this can later cause auto-immune. After a battery of standard auto-immune panels, my ANA came back slightly positive at 1:80 and I was weak positive for histone antibodies. But that's it so far. They even at one point thought I might have a hormone secreting tumor but those tests all came back normal. 

 

So now with my doctors baffled, and symptoms continuing,I have been referred to UT Southwestern for further evaluation (local to me). Scheduled for autonomic testing this coming week and following week have a tele-med appt with Dr. Vernino. Anyone have experience with this center or Dr. Vernino? If this doesn't work out, I guess Mayo Scottsdale would be next closest option.

 

From what my neurologist was saying, he felt they would be one of the best options for me at this point. From reading online, my symptoms don't seem to match perfectly with AAG, POTS, or anything else I can find, except general autonomic neuropathy. Hoping to better understand what's causing this and better treatment options. Though from reading online it seems this remains elusive for many?

Link to post
Share on other sites

@roamer1I’m so sorry you are going through this! You are very fortunate to get a referral to Dr. Vernino, I’m sure he will get to the bottom of what’s going on with you. I’m waiting to see if I will get to see him myself. I was diagnosed with POTS by my electrophysiologist. Lots of waiting and paperwork involved . There is also a Dr. Suleman in Dallas at Heartbeat Clinic . He is an advisor on  dinet.org website. I have a telemedicine appointment with him this Wednesday. I wish you the best with Dr. Vernino. 

Link to post
Share on other sites

Thanks Lisa. I was trying weeks ago to get in to see him or his team but external referrals were seemingly going nowhere; and I was told even if/when they contact me it could be a long wait, particularly because I don't really even have a diagnosis yet. I happened to see a dermatologist at UT Southwestern a week ago and she was able to refer me asap and got all appts scheduled for next 2 weeks. Dermatology seems to be one of the few departments there that a patient can self refer to directly see someone. 

I saw some mention of Dr. Suleman on this forum. I'm keeping his contact info depending on how things go at UT, particularly since my most worrisome symptoms are cardiac (BP and heart rate). 

Link to post
Share on other sites

@roamer1That’s awesome ! Please let me know how the autonomic testing goes and your appt. You can pm me if you want. I’m so glad you got in. I’m sure he will be able to help you. He’s suppose to be the best in Texas. Best of luck to you !! 

Link to post
Share on other sites

Had my autonomic testing at UT Southwestern today. Took 2hrs. They ran sweat test, breathing test, tilt table, and pupil test. Tech ran all tests, except pupil at end was with one of the neurologists on Dr. Vernino's team. They process results end of day, so no idea how things went. Whatever, I have, it seems to be getting better over past 6 weeks so crossing fingers I can continue improving my heart rate, BP, and severe insomnia. My constipation is not that bad, unless I take mirtazapine, which seems to make it very bad.

 

Also noticed that while mirtazapine helps a lot with sleep, besides worse constipation, it makes my BP go up and raises my resting heart rate. Takes 2 days to get out of my system and then BP and pulse come down a bit. Also the munchies go away and the intense tiredness during day. All of this, from just a 7.5mg dose before bedtime to help sleep. For now, before bedtime just taking 8mg melatonin, 125mg GABA, magnesium, 5-HTP, CBD oil, and some chamomile and lavender tea. That alone won't get me to sleep but at least I can relax in bed and every other day can fall asleep when my body finally wears out. Thinking of trying Valerian Root but worried about what it might due to my heart rate; read that it can cause rapid pulse in some people. Right now my body is very sensitive to anything stimulating and I seem to have a somewhat unusual heart rate reaction to mirtazapine. 

Link to post
Share on other sites
  • 2 weeks later...

Saw Dr. Vernino today and reviewed test results and symptom history. He acknowledged my case is very unusual from what they normally see. It appears I have been having autonomic dysfunction due to brain neurotransmitter imbalance/damage: a complicated, mixed type of drug withdrawal. I was taking ambien for sleep. Ambien effects GABA receptors. Then I was given 4wks of 2 antibiotics that also happen to interact with GABA as antagonist (block GABA) so I began having more problems sleeping and kept raising ambien dose and even added some alcohol (also interacts with GABA) to get to sleep again.

 

After several weeks of this, I started getting burning skin sensations and stopped everything and then apparently went into severe withdrawals from the imbalance. This was not recognized by hospital because it's an unusual combination not documented and I had no long term use issues. So I was not treated appropriately for withdrawals and things got worse. Basically my body was having severe problems controlling many of my autonomic functions. as result, I had huge blood pressure swings depending on position resulting in stroke, burning skin sensations, rapid and irregular heart rate, reduced sweating, shivers/shakes, body temperature that alternated between low fever and normal back and forth within minutes, constipation, severe insomnia, dizziness, and fainting episodes. 

 

A lot has improved in past 8 weeks though still left with challenges managing blood pressure despite 2 meds and vs. always having normal BP before this. my pulse is better now but I will get episodes of irregular heart beats and palpitations (comes on quickly like I just drank an espresso shot). Still have really really bad insomnia because I had to stop the mirtazapine and melatonin and valerian root and stuff does virtually nothing for me. Other than that I now have only a couple times a day light burning skin sensations in arms and upper lip. Dr. Vernino felt I would continue to improve in months/year to come and suggested treating for symptoms for now and see how things progress.

 

Also, I had a ton of autoimmune tests during all of this and only things that came back weak positive was ANA and histone antibodies. Histone antibodies are often triggered by drugs (e.g. positive when someone has drug induced Lupus) and he thought that in this case it reflected not an autoimmune disease per se, but rather the drug combination that led to the brain focused autonomic dysfunction. 

So not a typical case of autonomic dysfunction, and hopefully not permanent, but that's where things stand. Dr. Vernino really encouraged me to get in aerobic exercise every day; said he really believes it helps the body learn to rewire, compensate, and otherwise heal to reduce symptoms.

 

Curious if anyone is taking any supplements for insomnia and if so what's worked well for them? Also, anyone try supplements for their autonomic symptoms like BP, heart rate? At moment I'm trying B vitamins to help heal brain, eating healthy mix of fruits, vegetables, and nuts, and for insomnia trying GABA, valerian root, melatonin, CBD oil, and chamomile and lavender tea before bed.

Link to post
Share on other sites

Hi Roamer1! I began my journey at UTSW Dallas neurology last Feb. Thus far, allowing for cancellations due to COVID, I've seen Dr. Steven Vernino, Dr. Kyle Blackburn, Dr. Elizabeth Golden for autonomic nervous system testing, and have Dr. Lauren Phillips on my case now running some more labs to see why my nervous system is "moderately dysfunctional". All these UTSW Dallas doctors seem quite competent and compassionate and my experiences have all been positive.  

I've been taking ashwagandha (Withania somnifera) for pain and stiffness, hydrocortisone as a rescue for low blood pressure (I'm so glad it's cooler here now in the DFW area since hot weather made blood pressure plummet). For extreme pain moments I'll add passion flower (Passiflora incamata), cannabinoids, and Benadryl as a sleep aid. This week I have been trying a low dose of Bacopa (Bacopa monnieri, also called Brahmi, of the family Scrophulariaceae), a safe plant used in Ayurveda for neurological rejuvenation which I am really liking for better movement and increased pain management. 
Lemon verbena (verveine) tea is quite relaxing: https://www.harney.com/products/verveine?variant=1517655490566

It was nice to find DINET - some journeys are more fun than others and this one is just plain strange and has been for me for a long time. 

All the best to you and other members! 

Link to post
Share on other sites
21 hours ago, Rex said:

Hi Roamer1! I began my journey at UTSW Dallas neurology last Feb. Thus far, allowing for cancellations due to COVID, I've seen Dr. Steven Vernino, Dr. Kyle Blackburn, Dr. Elizabeth Golden for autonomic nervous system testing, and have Dr. Lauren Phillips on my case now running some more labs to see why my nervous system is "moderately dysfunctional". All these UTSW Dallas doctors seem quite competent and compassionate and my experiences have all been positive.  

I've been taking ashwagandha (Withania somnifera) for pain and stiffness, hydrocortisone as a rescue for low blood pressure (I'm so glad it's cooler here now in the DFW area since hot weather made blood pressure plummet). For extreme pain moments I'll add passion flower (Passiflora incamata), cannabinoids, and Benadryl as a sleep aid. This week I have been trying a low dose of Bacopa (Bacopa monnieri, also called Brahmi, of the family Scrophulariaceae), a safe plant used in Ayurveda for neurological rejuvenation which I am really liking for better movement and increased pain management. 
Lemon verbena (verveine) tea is quite relaxing: https://www.harney.com/products/verveine?variant=1517655490566

It was nice to find DINET - some journeys are more fun than others and this one is just plain strange and has been for me for a long time. 

All the best to you and other members! 

I was also impressed with how competent and compassionate the doctors are at UTSW. Both my primary (Baylor) doctor and and neurologist had referred me there but as of today still haven't seen those referrals register with them. I had a dermatologist appt there and she greatly sympathized with my symptoms and referred me to Vernino and things went very quickly. Was in within a week for the testing with Dr. Golden and then week after with Vernino. He was very upfront that my case is quite unusual and not something they really come across there. My luck! But he said he'd reach out to my primary doctor and sleep doctor to help work further on my case whether that's adjusting meds or additional testing like 24/38 at home BP monitoring.

 

I finally broke down and got the latest Apple Watch. In hindsight wish I had had it a few months ago; living alone there were so many times I'd try walking on treadmill or doing things around house and my heart would go crazy and I really thought I'd die. Would always have my iPhone close by in case I had to use Siri to call 911. and had my family checking on me multiple times a day. With the watch I can now have regular, if simple, EKG monitoring and activate Fall function so if I go down it can call on my behalf. I also went ahead and picked up a Kardiamobile 6L EKG for home. With the 6 lead monitoring and ability to send to scans to doctors, hoping it can capture what's going on when I'm in middle of experiencing one of the sporadic situations where my heart starts palpitating like I just drank a big espresso shot. 

 

I'm taking some of the same supplements now, if for slightly different reasons. The 3 big areas of symptoms I'm focusing supplements around are insomnia and brain neuron/neurotransmitter healing, and anything that helps BP

 

For neuron/nerve regeneration from my online research I'm taking:

* alpha-lipoic acid (protect nerve cells from further oxidative damage and assist in repair of damaged cells)

* ashwagandha (supposed to support regeneration of axons and dendrites of nerve cells and reconstruction of synapses)

* B Vitamins (particularly B6) - this one was supported by doctors for helping provide nerves/neurons building blocks to repair and is essential for creating some neurotransmitters

* Bacopa monnieri (promote neuron communication, which it is supposed to do by "enhancing the rate at which nervous system can communicate by increasing the growth of nerve endings/dendrites). I was careful adding this one because it interacts with dopamine and serotonin systems. But in my case it helps because it tends to lower BP and lower pulse rate, which is good for me. 

* magnesium - both for insomnia and nerves (been found to aid in regrowing damaged nerve cells)

* taurine (supposed to support neurological development)

* inositol (affects the processes that make neurotransmitters and enhances messaging of major neurotransmitters: serotonin, dopamine, GABA, glutamate --> body makes inositol for this purpose so just boosting what's it's already doing). Also does a lot more in the body, which is why the body makes it's own, just not enough in some cases

* PQQ (role in reversing damage to mitochondria and reduce neuron/nerve damage)

* COQ10 (mitochondria support and aid cardio function)

 

For insomnia from trial and error trying to replace the mirtazapine I've found this combo to work "ok" for past week (gets me to sleep quickly but only for 2hrs, then wake for 3hrs and then drift off for another 5hrs) - not as good as mirtazapine but no weight gain, constipation, or BP increase at least: 

* melatonin: 5mg time released a few hours before bed + 3mg fast dissolve right before bed

* GABA 125mg a few hours before bed

* Magnesium 400mg a few hours before bed

* Chamomile & Lavender tea a few hours before bed

* 5-HTP a few hours before bed

* CBD oil (sublingual) a few hours before bed

* Valerian Root 530mg: take one a few hours before bed and another capsule right at bedtime

** Going to try adding Hops capsules tonight and passionflower capsule later this week (Psychology Today and a few other publications reference that Valerian + Hops + passionflower most dramatically improve speed to fall asleep and quality/duration of sleep).

I'm also eating a lot of GABA rich foods. Not so much for brain as GABA is generally thought not to cross the blood brain barrier. But their are GABA receptors in lungs and elsewhere, particularly in the Enteric nervous system (gut), which communicates with brain and can influence brain activity. So for Enteric system, I eat a lot of whole grain brown rice, nuts (particularly raw pumpkin seeds) take probiotic supplements, and eat a lot of fermented products which boost GABA (yogurt and sauerkraut).

 I'd love if Benadryl worked for me as well! It help my sister sleep but for me it tends to make my heart race and then all I can think of in bed is my heart!

 

I have to admit my doctors wince when they hear all of this but they realize I'm in healthcare profession and know my stuff in general so they don't protest too strongly; in fact, seem curious what seems to work vs not. I would also stress that these appear to work for me and none of them are giving me any side effects but everyone is different (both physiology and symptoms) so certainly not recommending anything for others. I research heavily and have ruled out many other supplements like Ginko, St Johns, etc because of concerns. I also add one supplement at a time for a couple days and monitor for anything negative. Lemon Balm is one that did not work for me; actually increased my insomnia so went off of it quickly. 

Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

×
×
  • Create New...