Symptoms of dysautonomia

[annali]

For a few years now I've been having problems with dizziness. It has progressed from getting dizzy when standing up too fast to getting dizzy from simply walking or bending down to pick something up. It's always worse in the morning. It usually takes me till about 10am to feel better. I feel like I am overheating. When it's real bad I go to the bathroom over and over again and I'm weak. I've taken my blood pressure when I'm at my worst and it is usually low but my heart rate is fast, over 100.  I'm currently seeing a neurologist who diagnosed me with essential and parkinsonian tremor. My real issue is the dizziness. He did autonomic testing on me and I thought for sure it would provide the answers, but he said all was relatively normal. I do have some signs of parkinsons such as the cogwheel rigidity. Are there other tests that I could request, I see him again in Nov. I feel like I'm headed in the right direction, finally, as far as diagnosis goes, but I am also afraid I'm not doing enough, cause obviously my heart rate worries me. Does any of this sound like dysautonomia?

[annali]

Hi, I don't know what type of tilt table testing I had. I know it lasted about a half hour. I had the qsat and the deep breathing. My blood pressure was being measured. I made an appt with my pcp and cancelled it. I have to make another. I don't enjoy going to doctors and most of the time just feel like they are going to tell me something I don't want to hear. I will reschedule, I know I have to. I am a 31 year old mother of 3 and love my life, except for my health. I get really sad thinking I will never be the way I used to be. I know that this is the way I will always feel and it will never go away. I think sometimes ignorance is bliss and to not know is better than knowing. Thanks for the advice and input, I will keep everyone posted.

[Heiferly]

This might sound very confusing, but if your tilt table test was ordered/supervised by a neurologist, you may have had a "neuro" tilt, which is usually a much briefer test than a "cardiac" tilt.  (That's why Marie was pointing about above that some patients need a long tilt table test; there are different versions/protocols for the test.)  I think it would really make sense for you at this point to ask your PCP about the possibility of a referral to an EP-cardiologist.  They do a different subset of testing with regard to dysautonomia (such as holter monitoring, EKG, echocardiogram, *cardiac* tilt table testing (with or without serum norepinephrine levels ... it depends), ambulatory blood pressure monitoring, and cardiopulmonary stress testing); in some forms of dysautonomia, these tests may be more enlightening than the neurological autonomic testing.

Speaking of which, what autonomic testing did your neuro perform besides the neuro tilt?  (QSART?  TST?  Deep breathing/heart rate variability?  Valsalva?  Cold pressor?  Isometric handgrip?  Pupillary response?)

Welcome to the forum and I look forward to getting to know you better,
-Heiferly.

[evo123]

Hi, I am sorry to hear you are having these symptoms x

Have you had your adrenal glands checked?  If not then a refferal to an endocrinologist would be justified.  It is wise to rule out all other causes of your symptoms x

Keeping track of your symptoms is a good idea, there are trackers here that may help you with this, the link is below:

http://www.medhelp.org/trackers/list/196

xx

[annali]

So I've been recording my blood pressure for the past two days. In the mornings my blood pressure is around 90 over 60 and my heart rate is consistently above 100, at rest and standing. The only time my heart rate goes down is in the afternoon. I'm going to call my pcp on Monday to go over it with her. And I've been checking out heart rate monitors.

[mtgardner]

Keeping a BP and HR chart that allows doctors to see your swings would be helpful.
Some of us with dysautonomia have surges of high BP.   This when we also have postural hypotension.  Marie

[annali]

My tilt table test didn't last very long. I have done the t3, t4, etc. I have had a brain mri. And as far as cardiac, they haven't checked that out. A few times nurses and doctors told me my BP was on the high end and asked if it was normal for me, which it is not, it is usually on the low end. And I've had a nurse tell me my heart rate is high. I'm thinking I should be more persistent about my blood pressure and heart rate. I have a blood pressure monitor, so I'll start checking it frequently. I wish I knew my families health history but my mother was adopted. Thanks for all the feedback and I'm glad I found this forum.

[mtgardner]

Hello and welcome!  Sorry you are having all this happen.  The almost passing out with bending over can really play havoc with your ability to get things done.  I think ENZYMELOVER and ChristyDrake make some really good points.

  I have a few thoughts:

On the tilt test some people do not show a response until almost an hour into the test.  Then they have dramatic changes.  Hopefully they took the time to do a longer one with you.

As for thyroid, hopefully they tested free T3, freeT4, TSH, and antibodies.  If the antibodies were positive for Hashimoto's you can get the gammit of hyper and hypo in the beginning. I agree with Enzymelover that frequent testing of thyroid is a good idea.

Blood sugar and kidney function should be checked as well.  The kidneys are very involved with BP so hopefully they have been checked out too.  I am wondering also if they have checked out cardiac.  Have they done an MRI?

It does take time to check all out and usually you are being handed from one specialist to another a they put you through testing.  

It is very helpful to describe your symptoms well.  I would take BP a lot during the day and keep a log with a note of what you were doing at the time.  This will give them clues.  They may want to try a holter monitor down the road.

Family history is also important with  Parkinson's.  My hope is they find answers for you soon.  Not knowing the dx. is hard.  Often you end up with more then one dx.  

Hope you let us know more as things go along.  This is a great forum for getting information and sharing as well.  I am glad you found us!  Marie.  

[annali]

Enzimelover... I don't know much about hyperthyroidism. It never crossed my mind, I figured blood tests would suffice. I will check that out. I appreciate all the feedback.Thanks!

[annali]

Both times I had to see my neuro for my tremor, it was early morning and I was shaking very badly. I was happy it worked out that way cause he got to see what I was talking about!  I sometimes want to call my doctor and say...hey, how about I come in right now?

[enzymelover]

Tremors, feeling overheated, frequent bathroom visits, a racing heart, dizziness, thin body build - these are all classic symptoms of HYPERthyroidism.  But yes, they can all be symptoms of AD too. Still, I would suggest getting regular thyroid tests for awhile, maybe every few months for 2 years. It can take awhile to show up in a blood test. Maybe a thyroid specialist, with urine testing etc. could rule out hyper-thyroidism for certain.

[CHRISTYDRAKE]

My son was also having a good day when he had his TTT done.  His was borderline, so they diagnosed with POTS.  It seems every time he goes to the doctor, he is having a good day.  Whenever we travel, his doctors are in Cleveland and we are not, he has a good day.  So I figure, maybe he should just always travel(ha).

[annali]

I've had thyroid testing. I am very thin, it's just the way I am. I've had a lot of blood work done. They did find that my ana was positive, which it wasn't in the past. I've done the tilt table test, but wondering if the results depend on how I felt during the test. I can have a day where I am not so dizzy bending down, standing up, etc. And another day where it is more severe. I've had just a couple of days where I had to stay in bed because of it. I have 3 kids and just picking up toys off the ground makes the room start to go black and I have to slow myself down. I go walking alot and it does it then too. I feel a bit like I've had one too many drinks!!

[enzymelover]

Have you had thorough thyroid testing? With metabolic changes, your thyroid function needs to be carefully examined, to rule out a problem here. Are you very thin, or have you had trouble keeping on, or losing, weight lately?

[CHRISTYDRAKE]

Did he give you a tilt table test?  That would be the test to request for sure.  It would show if your heart rate changes from laying down to standing up as well as blood pressure.  If your heart rate goes up over 30 beats that will point to POTS for sure.