Looking for proper diagnosis/treatment

[Mk1]

Hi, newbie here.  Would love and greatly appreciate input from anyone that is dealing with this overwhelming disease. 

I have seen a cardiologist and a primary care/researcher locally (both have average knowledge), but they are not interested in figuring out what type of dysautonomia I have and treating it accordingly. I do not fit what they say is a POTS patient, but they agree I most likely have some type of dysautonomia and one even suggested MCAD due to my histamine sensitivity (get migraines if too much histamine, but no other reactions). I am super sensitive to meds now and I am terrified to be a human guinea pig.  I failed the TTT and the poor man's tilt.  That is the extent of testing they do locally, so they want to just try me on meds.  So I live in the South and would prefer to fly to Vanderbilt, but my ultimate goal is to find someone who is curious and extremely knowledgable on all dysautonomia types. So my question is if you had to fly anyhow, where would you go...Vanderbilt, Mayo?

My main issue is my fast heart rate and the anxiety, fatigue, shakiness, brain fog and GI issues that comes from it.  Migraines are a little better and controllable with rescue meds.  I get a fast HR randomly through the month (I cannot find a pattern and have been using a calendar for months) and always get an uncomfortable spike after breakfast and lunch, but not dinner. When I am having flares, my HR stays in the high 90's/low 100's most of the day, so not crazy high, but I feel so incredibly bad.

I feel completely overwhelmed by all of this and really need some answers.  I do understand treatment is a little trial and error, but I have read that some meds can help vs harm depending on what type you have.

I am not a beta blocker candidate due to low BP.  Cardiologist has suggested a Corlenor trial, but I am scared because on my non flares days my standing HR can be in the 60-70 range. Claritin and Zantac were suggested to try for MCAD.  Claritin possibly helps, Zantac lowers my stomach acid too much and then I have more digestive issues.  I do take digestive enzymes at every meal and a histamine blocker as needed. 

 

My history:

1993: mono

1993: migraines started and averaged 4-5/month

1989-2006: 7 or 8 neurocardiogenic syncope episdoes with seizure like movements all pain induced.  Last episode/2006 I was put on Lexapro 5mg.  *Health is overall good with the exception of the migraines and rare syncope.

2011-severe fatigue, flu like body aching start, no problems with HR or other dysautonomia symptoms

2015 (may)-almost daily migraines, decide to stop lexapro to see if that is making migraines and health worse. Start a diet high in potassium and salt (Stanton Migraine protocol). no problems with HR or other dysautonomia symptoms

2015(nov): diagnosed with lyme and heavy metals (they suspect Ive had for a long time), start doing IV ozone, IV UVBI, and IV vitamins.

2015 (dec): after 4 weeks of IV treatment I start having severe reactions (extremely high HR, body tremors, hot/cold, panic attacks, diarrhea etc). Start reacting to all vitamins and meds I am taking.   No history of anxiety or depression prior to this. 

2016 (Jan-June): a week of feeling 80% healthy and normal and then the next week would be extreme with full on panic attacks, high heart rates, hot/cold, GI issues and what felt like adrenaline running through my veins. averaging 10-12  days a month where I am functional.  I cannot keep weight on and loose weight everytime these episodes come on.

2016-CURRENT: Still no syncope episodes since 2006. Cortisol is high, which is adding to the severity of symptoms.  No more panic, just manageable anxiety.  Brain fog and numb to the world feeling is frequent though. Dizziness is getting more severe. Still reacting to baby doses of supplements I am trying. Averaging 5 days a month I am functional.

 

[angelloz]

Hello,

Sorry to learn of your situation but many can relate. I have been to the Mayo in Rochester but not Vanderbilt. I had some good tests done at the Mayo and the doctors took their time and listened but I believe from what I have read that Vandy is better for autonomic problems. I have the weight issue too with losing with flares and barely maintaining when better. Also, have the medication sensitivity you speak of. It makes trial and error very scary.  I know others will chime in..you have found the right place!

 

[corina]

Hi Mk1! Glad you found us! Havre you checked our physician's list? It may help you find more local doctors (easier to travel to?). A lot of us have been to clinics like Mayo, VanderBilt and Cleveland so hopefully they will be able to help you on your way! 

[Mk1]

Thank you angelloz and corina for responding and the encouraging words!  I only have 3 physicians listed in my state and the one I went to does not do testing unfortunately.  I could definitely call the other 2 and see about testing.

 

[Katybug]

We're you ever treated with appropriate antibiotics for the Lyme?

[SarahA33]

Hi, welcome to the forum! I'm off to bed atm but will try to write more later, just wondering real quick if you've been checked for cushing's?

[yogini]

You mention your heart rate.  Have you tried measuring your blood pressure if you aren't feeling well?  If your BP is low, you can try increasing your salt intake and wearing compression stockings - you may want to mention these ideas to your doctor.  

Also, many of us feel better towards the end of the day. You can try eating smaller meals instead of a big breakfast or lunch. 

[Guest KiminOrlando]

Hi MK1.

I see you are in Florida. So am I. Honestly, I haven't had much luck locally with physicians, but I did get a tilt table test in Orlando. I failed and that was pretty much the end of that.

I can tell you that I went to Mayo in Jax, and that didn't really work for me. I ended up at MUSC in Charleston, SC for an autoimmune disease and was matched up with an excellent cardio that specializes in dysautonomia. I go for a visit several times a year. He referred me out for a second opinion at Vandy, Dr. David Robertson, several years ago. They did several tests and a lot of educating me so that I felt like I could understand how to approach this disease.

After you get some type of official dysautonomia dx, I have a good gastro in Orlando. He read the ebook on dysautonomia and is willing to do research, which seems to be more than most. I won't tell you he will solve it in 3 appointments or less, but he did eventually figure me out and I like him. I was on my 4th gastro and losing hope rapidly.

Based on what I have read about you, we have mostly different symptoms. The gastro issues could be similar. Do you know if you have pernicious anemia? If so, it could be gastroparesis, but if not, I don't know that it necessarily rules it out. Gastroparesis often pairs with dysautonomia and autoimmune diseases, but I don't know specifically about Lyme. 

Good luck with your search for answers.

Kim

[Mk1]

Katybug:  In 2011, I was given a 4 week course of antibiotics for lyme and sent on my way   I was also on antibiotics an average of 9 times a year from 2006 to 2012 for sinus infections.  The 2 LLMD's I have seen feel that antibiotics wouldnt be effective in someone like me as they suspect I have had lyme for a long time and are concerned what the long term use would would do to my gut health.  I have been hoping and praying that my body would stabilize a little more, so I could try one of the herbal protocols...most likely Buhner.

SarahA33: negative for Cushing's. 

Yogini:  On my good days or let's say better days (haha), my BP runs around 102/68.  When I am symptomatic or just randomly I will dip down to 90/60 but not lower.  Its the heart rate that fluctuates like crazy.  I drink lots of water, 1 electrolyte drink her day and add sea salt to meals and water throughout day.  I eat 6 times a day, aiming for every 2 to 2 hours, always having protein at meals to avoid blood sugar swings. I just ordered compression stockings, but was a chicken and ordered the knee high only without a sock.  I havent seen much of a difference, so I think I need to try the thigh high with sock.  Dr also wanted me to start the bike instead of the treadmill I have been doing.  I honestly struggle on the bike, probably due to my weaker leg muscles.  I see that you walk and do yoga.....any tips for how to do those without making symptoms worse?

KimInOrlando: Hi, fellow Floridian. Thank you for the heads up about Mayo and telling me about your SC treatment..that's great! I  tested negative for p. anemia.  I asked local dr for a gastro empty scan and he said its not necessary because he has no doubt I have gastroparesis based on my symptoms. Hmmm.  I will be contacting you for more info on your GI dr!

 

[Katybug]

I asked because Lyme can be a differential diagnosis for dysautonomia but it can also be the initiating cause of dysautonomia.  I was hoping, for you, that Lyme treatment might allow you to feel better at this point. I hope you get it figured out.