Dysautonomia? Pots? Or What?

[Will_I_am]

Hello, I am new at this and hope it comes out correctly. I have a recent Diagnoses of Idiopathic Tachycardia. I am not sure I understand if this is Dysautonomia and I'm a little confused with the testing and the results. I will start out with a short version of the Doctor's report.

The Tilt Table Test shows exagerated heart rate response to Tilt however, it does not meet the criteria of POTS. The heart rate increased between 15-30 bpm. However over 30 minutes the heart rate did increase by 30 bpm and there was instability in the Cereberal circulation as well as blood pressure. Pretty much he believes it is Idiopathic Tachycardia.

Q sweat is normal

QST and Emg are abnormal

The 24 hr bp monitor shows an avrage bp of 126/80

Echo is normal, no left ventricular Hypertrophy. There is mild Mitral and Tricuspid Regurgitation.

Autonomic testing is quite normal with normal four phases of vasalva maneuvers.

His loop recordings consistently show Tachycardia. There is Sinus Tachycardia, this occurs during pretty much with all the spells he is sending in.

The Doctor said I was in the grey area for POTS. It just so happened during the Tilt Test and some of the other testing, I was having a good week. I also read on this website that in doing the Tilt test you may need to stop certain medications such as Beta-Blockers. I don't know if it really matters or not in diagnosing Pots whether you are taking them are not during the Tilt test but I was on mine which is Metoprolol succ er 100 mg 1x a day, I was given this prescription by a previous Doctor due to extreme high blood pressure and an average heart rate of 120 bpm.

I also have some of the reports from my testing and they are as follows,

Nerve Conduction test

1. CMAP Ampllitudes were diminishedbilaterally. Motor Nerve Conduction in both lower extremities showed slowing.

2. Sensory Nerve testing in the lower extremities showed absence of responses and absentSensory Nerve Conduction.

3. A needle EMG exam of lower extremities showed mild denervationchanges in both extensor Digitorum Brevis Muscles.

Basically findings showed electrophysicologic evidence for a mixed Sensory Motor Peripherial Neuropathy.

Sonographic findings of the Thoracic and Lumbar spine were to lengthy to list showing edema and swelling in lower lumbar muscles and trauma etc, no known cause of this.

Q sweat on the Doctor's report noted normal. Q sweat report findings were;

1. Forearm resting output 41 Reduced Response

2. Proximal leg resting output 39 Normal Response

3. Distal leg resting output 36 Normal Response

4. Proximal foot resting output 44 Reduced Response

Yesterday one of the Nurses said on my report it said I had hypovolemia but I do not have that on my report.

My Symptoms; Dizziness/light headed, loss of balance,nausea, blurred,double vision and problems focusing,slurred speech, heart palpatations-fast,hard,skipped beats,shortness of breath, trouble finding the right words at times in conversation etc, dry mouth,dry eyes, painful and red eyes, Migraines, muscle spasms, chest pain, muscle and joint pain, excessive sweating, bloating, stomach/intestinal pain, extreme fatigue, weakness, blackouts-not fainting-loss of vision,hypertension,hypotension, flushing, clamminess, swelling of hands, cold feet, upper, lower back,neck and shoulder pain ...maybe associated with disk problems and Brachial Neuritis of the right shoulder. Legs feel weighted at times, low body temperature average 97.2, heat intolerance but I have always had this but seems to be worse, chills on occassion, slight unexplained fever at times, frequent sinus infections.

Example of bp readings;

1-13-11 these are the standing readings unless noted

1. @ 8:15 am 83/61.

2. @ 8:30 am 97/70.

3. @ 8:42 am 95/70, sitting BP was 108/77.

4. @ 10:00 am 100/69.

5. @ 11:49 am 105/77.

6. @ 12:30 pm 119/84.

7. @ 3:29 pm 105/76 pulse 105, taken +/- 20 minutes after after walking for an hour, I was trying to shake off fatigue.

8. @ 3:42 pm 100/78 pulse 105.

9. @ 3:52 pm 116/91 pulse 108 Seated.

10. @ 5:30 pm 147/101.

1-14-11

1. @ 8:10 am 90/71 standing.

2. @ 11:23 am 120/93 pulse 78 standing.

3. @ 11:32 am 110/84 pulse 86 standing.

4. @ 11:34 am 129/95 pulse 78 seated.

1-15-11

1. @ 9:00 am 79/56 pulse 108 standing.

2. @ 9:05 am 107/76 pulse 93 seated.

Current Diagnosis; Idiopathic Tachycardia, Crohn's disease in remission, GERD, Brachial Neuritis of the right shoulder, Hypertension, controlled Disbetes,Sleep Apnea and Rest less legs but has deminished after taking Lyrica.

Medications, Metoprolol was 100 mg Doctor reduced to 50 mg after noting my low bp even with high readings such as 150/110, Aciphex, Lyrica,vitamin B12, and Alpha-Lipoic Acid.

I know this is lengthy but maybe someone has similar experiences, advice or thoughts that might be helpful.

Thanks,

Billiam

[E246]

Hi,

My first tilt test was during a remission - i did not even know about POTS at the time.

The second test - i had been on beta blockers and the test was was marginal.

By the third test my pots had become full blown and it proved positive and has been ever since.

hope this helps.

[Will_I_am]

Thanks for the info... any advice is helpful. I wonder at times with the symptoms I have and as many Doctors as I have seen if it is in my head/psychological. But I'M not hearing any voices yet...haha. Are these symptoms typical as well? What is your long term prognosis? Any luck in it getting better than worse? I wish you good health.

Thanks again

Mark ( Billiam)

[icesktr189]

Those all sound like POTS! Right now I am in a relapse and have all those symptoms and bed bound. But good news is that with the right medications and slow, mild exercise you can start to feel a bit more human.

Get yourself into a knowledgeable doctor as soon as you can. Just because they are a cardiologist or neurologist, does not mean they know about POTS or OI

You sound like you are having blood pressure swings which are very common with POTS. Hope you start to feel better and just know that most of these people on dinet know more about POTS than most doctors! LOL

[Will_I_am]

Thanks Dani,

I just decided to check my bp again this last week and it had been months since I had checked it. It just didn't seem to matter what I got until they saw it with a reading at their office, it was almost always high or average with a few low ones that the doctor dismissed as that the nurse must have measured it wrong. Anyway that is why I came here for some answers and if I should question my Doctor more on taking meds or not during testing. My new Doctor is a cardio specializing in Dysautonomia he is the one that has done all the testing lately. That is why I am looking for any advice on it. He says I have Idiopathic Tachycardia and Pre-Pots but there is no such thing as Pre-pots....well I am feeling like the idiot part, maybe a Pre-Idiot. LOL! Hope you get to feeling better too and keep in touch even if it's just to say today stinks. You will be in my prayers tonight, can't hurt.

Thanks

Billiam

[Rachel]

Hi Billiam,

It sounds very likely that you have some type of dysautonomia. It could still be POTS even though the 30bpm heart rate increase was delayed. As you said, you were having a better week, which could change the test readings. The medication could have changed your heart rate and blood pressure as well. Did the doctor know you were on Metoprolol during the tilt? You might want to ask about going off of the med and being retested to get more accurate results.

Welcome to DINET! I hope that you find this to be a helpful place.

Rachel

[Will_I_am]

Hi Rachel,

No he did not know, but it seems he should have, when I did question him about it he said if I was off the beta-blocker it may have taken me out of the grey area. Yesterday he decreased my Beta-Blocker dosage from 100 mg to 50mg due to low blood pressure as noted above but I made sure he was aware of my high blood pressure, anyway my blood pressure is increasing tonight and my bpm has jumped as I checked so far..from 105 to 142 bpm it was averaging around normal range withn spikes up over 100+ . This is just one day and I will try to keep track of it more now that I have seen the jump. who knows? Thanks for the reply and support.

Billiam

[E246]

My doctor is a pots specialist and requested that i stop the beta blocker for 2 days before i came for the test.

In the early part i think it was a bit marginal but there is no question now.

Not that i am wishing this on you, just it is a relief to have some answers.

All the best.