Questions about Dysautonomia

[Caretoomuch]

I am new to this site so please bear with me. My wife has been sick for over 4 years now and the doctors are slow in identifying what is wrong. They finally decided she has Sjogren's syndrome, but it doesn't explain everything, especially her Neurologic symptoms. So I have been doing extensive research on my own. I cross referenced all her symptoms and it led me to P.O.T.S. She has 41 out of the 61 symptoms listed on this site. When we asked her neurologist about it she said. "I highly doubt it." "She has no low BP episodes upon standing." So she dismissed it. However she does have very high BP's example (158 over 102) which is not normal for her. Her usual would be in the 120 over 75 range. The main things she experiences is horrible headaches, lightheadedness, dizziness, weakness, and fatigue. These all get worse as the day progresses. At first we thought she had a spinal fluid leak, but again, the doctors don't seem to want to explore that. They do some tests, but never enough to absolutely define what is going on. I'm not a doctor but I am very intelligent and I can read. Does anyone out there have any thoughts on all of this? Your help would be greatly appreciated. Thank you!

[Tachy Matt]

Patients with POTS/dysautonmia don't always have low blood pressure upon standing; in fact, I too have high blood pressure upon standing and still am prone to experience some of the symptoms you listed. The main issue with something like POTS is the blood flow upon standing and not necessarily the blood pressure number. My blood pressure is sometimes perfect upon standing, but I'm still very symptomatic because blood can start to pool in areas such as my legs or lower abdomen. I'm not a doctor, so please take what I say with a grain of salt, but I do believe it would be wise to explore the option at the very least. Some of the symptoms you listed are the hallmark signs of what we Potsies experience daily. Best of luck to you and your wife!

[statesof]

Just looking up a quick query on pubmed, it looks as though autonomic symptoms may be common with individuals with sjogrens (http://www.ncbi.nlm.nih.gov/pubmed/22562982). It may be that she is experiencing some of the autonomic symptoms, it could be worth asking your doctor's about this.

[MomtoGiuliana]

Welcome to the forum.

POTS is not defined by bp changes, as noted above, but by excessive change in heart rate from prone to standing.  Some people w POTS have high bp, others low, others a mix of high and low.

http://www.dinet.org/index.php/information-resources/pots-place/pots-overview

POTS is defined by an increase in hr of 30 bpm or more on standing.  A tilt table test would measure this.  You could simply measure her hr lying, sitting and standing and record the result as a first step.  Unfortunately not all doctors are well-aware of this condition.  Generally we are diagnosed and treated by EPs or neurologists.

Some patients with POTS have one or more autoimmune disease as well.

[Katybug]

Just to add to the above responses,  there are several types of dysautonomia, POTS being only one of them. As MomtoGiuliana noted, POTS is diagnosed based on an increase in heart rate from lying to standing. However, there are sub-types of POTS also, and, one of them has a hallmark of also having an increase in blood pressure upon standing referred to as hyperandrenergic POTS or Hyper - POTS (this doesn't determine if a patient has POTS or not, just what treatment might work best for that patient.) 

If you feel like you've hit a dead end with your wife's current docs, you might see if there is a doctor on our physician list near you. The docs on our list have proven to be able to diagnose dysautonomia and associated conditions. Here is a link: http://dinet.org/index.php/physician-list?view=physicians

 

Edited June 11, 2016 by Katybug

[Katybug]

Here is a link to another thread on this forum that has several really good POTS papers posted:

 

[looneymom]

My son was diagnosed with daily persistent headaches that were 24/7. This pain issue was horrible for him and his doctor tried him on several medications. However, my son had severe scalp pain that was part of the headache pain. This type of pain is known as allodynia and can be part of chronic regional pain syndrome. My son got some headache pain relief from Extended Release Namenda but the rest of his pain and headache was totally gone after being put on Low dose Naltrexone.It took 8 weeks for all pain to be gone. Low Dose Naltrexone helps with chronic pain and chronic regional pain syndrome . Both of these medications can be prescribed by a neurologist. My son has low blood pressures but POTS can be associated with high or low blood pressures. A tilt table test could provide a definitive diagnosis of POTS. Don't give up, it's hard to find a doctor that understands POTS and the symptoms that come along for the ride.

[issie]

I'm HyperPOTS and my symptoms are similar to your wife's. Sojourn being an autoimmune issue, can go along with POTS. It is in my family, but I don't have it. But I do have other autoimmune issues. Many of us with this subset type also has MCAS (Mast cell activation syndrome ).  Something else you may want to look into. 

You can do a poor man tilt test to get an idea of what her pulse is from lying to standing. A electocardiologist or a neurologist familiar with POTS can do a tilt test and other test to determine for sure if POTS is a connection for her. 

Just want to say, I admire your determination and love you are showing in looking for answers for your wife. When one is so sick, it's hard to be your own advocate. It's great that she has you. Hope you get it figured out. 

Issie