Possible Symptoms of POTS

[Farah]

I am new to this forum but I have been reading while researching my symptoms and it has been helpful

My story...

I gave birth to a healthy baby towards the end of April 2019 but my pregnancy was complicated by gestational diabetes and post partum pre eclampsia  that required ICU admissions for IV magnesium and discharge on Labetolol that eventually was weaned off. I actually had no issue for months after my given birth. 

3 months after birth I began to experience fatigue, a sense of weakness ( like inside me), persistent headache, elevated heart rate and generalized muscle aches esp upper and lower back. I had severe chest pain and axillary pain which led to a mammogram that was normal.

Physical and complete blood work by my PCP on Oct 2019 were normal. She diagnosed me with post partum anxiety depression and referred me to a therapist. 
 

On November I began to experience Gi distress in addition to my other symptoms which were abdominal bloating, pain at times and constipation. I had a pelvic and abdominal ultrasounds which showed a small ovarian cyst and liver hemangioma. My PCP diagnosed me with IBS and referred me to a GI specialist. In November during a month of stress I began to twitch everywhere. There are like muscle twitches that began on my hands but went to legs, buttocks, back and face but subsided after a couple weeks but came back here andvthere until the summer when they completely resolved.

For the Winter my symptoms waxed and waned until the headaches became unbearable that my PCP sent me for a MRI which came back cleaned. She started me on Lexapro but I never took it due to side effects fear. 
 

I actually felt great during the Spring but my GI symptoms worsened again in June and persisted which led to a colonoscopy that revealed a polyp in August and another pelvic ultrasound that showed only fluid in the cul de sac.

My PCP said all my symptoms were due to anxiety and sent a script for celexa

Starting in October I woke every morning feeling tremulous like something was oscillating inside me. I had on off weakness during the day, severe chest pain, palpitations, neck pain (felt a pressure encircled my neck), upper back pain and hands/ feet are very cold and painful. The pain is usually on the left side but sometimes it alternates to the other side. One day I was at work my chest pain became unbearable and I felt my heart was racing. I went to urgent care where EKG showed sinus tachycardia at 136. Chest X-ray was normal and Covid was negative. CBC and BMP were normal. She referred me to the ER to rule out Pulmonary embolism. In the ER they did additional blood work included a d-dimer,CBC and TSH which were all normal. He gave me 2 liters of NS and Ativan... discharge home to follow up with cardiology. I felt great going home but woke the next day tremulous, heart rate 118-135 even higher when I climbed stairs, cold painful left arm, hands and feet. That weekend I called 911 because my heart was racing EKG showed sinus tachycardia 120.

I saw the cardiologist who did another EKG... again sinus tachycardia at 116. She scheduled an echocardiogram and halter monitor. The Echocardiogram was not optimal because my heart rate was 124 but no structural abnormalities she said. The holster monitor showed an average heart rate of 93 (56-158) but I spent most of that day in bed. She said it was anxiety and prescribed propranolol as needed. 
 

I felt better for a weeks but last Monday I started twitching all over again my quads, legs, feet, hands, buttocks, face and even neck/throat. It’s not just one twitch but now it can be multiple twitches that usually stops when I move that body part. On Saturday I had several throat twitches. The twitches are noticeable only when I am at rest. Again I started to wake up feeling tremulous, nervous, cold legs and painful extremities. I check my BP and heart rate this AM: 122/79 HR 98 supine and 135/105 HR 131 after 1-2 min of standing up then my heart rate down to 115-118 if I am sitting but goes up to 130+ with movement 

 

I took the propranolol this AM which has subsided my palpitations and racing heart but I am still twitching every where, cold feet with pins needles, crawling sensations on my feet, legs and hand. Also noted sharp pain on my hands/feet plus now I also feel a lump in my throat and some throat pains since yesterday. 
 

I will see a neurologist about the twitching next Monday should I ask her about a table tilt test? I am so anxious all the times because my health seems to be in a roller coaster and I do think that what gives my anxiety!

 

[Pistol]

Dear @Farah - Oh my, what a mess you are enduring! I am so sorry! --- I am glad you are seeing a neurologist, the twitching sounds like something a neurologist would be checking into. I am not sure if the neurologist would order a TTT - that is usually done by a cardiologist. With your elevated HR and BP I definitely would be asking for one. With your symptoms it is appropriate. Since you have elevated BP upon standing often they will check your neurotransmitters during the TTT, to determine of you have elevated norepinephrine levels ( if so it would be hyperadrenergic POTS ). 

I have HPOTS and - although I had symptoms off and on throughout my life - giving birth to my daughter triggered it for me. I also had post partum depression, although mild, and terrible fatigue, just like you. My HR and BP would skyrocket with standing. It took 2 years and 5 cardiologists and 1 neurologist before I finally saw a specialist who diagnosed me with HPOTS. Prior to seeing him I had tons of tests, including 2 TTT's ( confirmed NCS and POTS ). My norepinephrine levels were sky high, therefore the HPOTS diagnosis. 

Did anyone recommend increasing salt and fluid intake and wearing compression hose? That is usually the first - and very important - treatment. Watch for your BP though! I have high BP but still eat tons of salt. 

5 hours ago, Farah said:

She said it was anxiety and prescribed propranolol as needed. 

I am surprised she would order the propanolol as needed. And I also would not so easily accept the anxiety diagnosis. So many of us get that diagnosis slapped on because we have the physical symptoms of it and all test are usually normal. That is why you should ask for a TTT - that would differentiate from anxiety. You seem to fit the criteria for POTS: symptoms longer than 6 months, tachycardia greater than 30 BPM increase upon standing in the absence of a drop in BP. Also - pregnancy and childbirth are known triggers for POTS. IBS and other GI symptoms are common in POTS, since the ANS controls the cardiovascular system as well as the GI system. 

 

5 hours ago, Farah said:

I am so anxious all the times because my health seems to be in a roller coaster and I do think that what gives my anxiety!

The problem with POTS is that the symptoms are similar to those of anxiety - yet they are not caused by anxiety. Actually the anxiety FOLLOWS the symptoms, meaning we get scared by the symptoms. If elevated adrenaline is at play then we also get overly excited, which also mimicks anxiety. So as you see - a inexperienced physician can easily brush the symptoms of POTS off onto anxiety. But that will not help you, IF it is POTS ( determined by TTT ) then there are many different meds that can be tried - below is a link to articles from our Information Resources tab that may be helpful to you 

POTS What Helps? - POTS - Dysautonomia Information Network (DINET)

How is POTS Diagnosed? - POTS - Dysautonomia Information Network (DINET)

Best of luck, please keep us posted how your neurology appointment went, and if you will be getting a TTT.