autonomic dysfunction? :/

[lovemyjays]

Hello everyone! I finally figured out where to post my question so here goes.. A little over 3weeks ago I had a csection. During the procedure I was given an epidural using only lidocaine which didn't completely numb me. The doc kept injecting more thru the cath in my back and I still felt the pain! He couldn't put me out cause I have myopathy *dont know which kind* and he was afraid that I'd have malignant hyperthermia as a reaction to the GA. During the surgery I had both tachy and brady cardia which I believe subsided on its own. The next day I started having tingling and numbness in my legs and back *which now is almost completely gone* 4days after my csec. I was home watching tv then noticed my heart kept skipping beats *which happens sometimes* I felt really lightheaded and sick. Later that night the whole room started spinning and when I checked my pulse it was 57. *my pulse is always in the 90s- 100s* I ended up going to the er the next day and all tests came back normal including my thyroid test. The lowest my heart has went laying down is 42bpm. I developed a new symptom a few days after .. When I stand my heart beats really fast but as soon as I sit it slows down. I also have nausea constipation diarreah .. At first I wasn't sweating either but now I've been sweating a lot more. They did a test in the er when I layed flat sat up and stood up and had my bp and heart rate monitored. My bp was normal except it raised when I stood up *not sure if that's normal* the er docs said that my problem isn't cardiac related and the doc said something could be stimulating the nerves. If that's true then is it likely to go away on its own? My main complaint is my heart beating so slow. I asked for meds to speed it up and they wouldn't give it to me. They said its normal for my heart to be low cause I'm young *20years old* but I don't understand how my heart rate can go from in the 90s to 40s in one day. Is it possible that I might need a pacemaker to fix this problem even if it isn't cardiac related? Sorry for the long post and thanks in advance for the responses! X0x0

[lovemyjays]

Ugh soooo many symptoms comes along with this wonderful dysfunction! I just thought it was so weird how one could have bradycardia and tachycardia :/ but I guess our autonomic nervous system can do that. Atleast I can bump my heart up from brady to tachy just by standing loll. Its kinda funny though cause when I was in the hospital last time my friends were with me and evertime my heart would drop the machine read "brady" so now I'm nick named marsha and my friends won't shut up about it haha. So I guess we can have some funny moments out of this! But yeah I would be scared to take a beta blocker too but that's good that you trust your doctors. I hope your treatments working for you and I hope I can find one that works for me. Anywho hope you're doing well today! :)

[evo123]

Hiya x

Yeah, my bradycardia is due to autonomic dysfunction.  But my doctors dont see it as a major concern, it has scared them a few times but I think to them it is just another symptom of this.  They have also still put me on betablockers to control the tachy.  To be honest I was a bit concerned about this with having my hr drop but they assure me not to worry! x

[lovemyjays]

So your bradycardia isn't due to autonomic dysfunction cause from what I've read that's a symptom as well. I just hope my cardiologist gives me some information tomorrow! And ill def make an appt with one of those docs. Thanks agan :)

[Heiferly]

There are two hospitals in NYC with autonomic testing clinics; you are very fortunate to live so nearby, as such specialized autonomic hospital facilities are very few and far between!

You can find the links to their websites with their contact info here:

http://www.medhelp.org/health_pages/Neurological-Disorders/Dysautonomia-Specialists/show/717?cid=196

If you contact either of them they should be able to set you up with an intake appointment with an appropriate specialist and schedule you for all necessary testing from there.  If it is a form of autonomic dysfunction, POTS or otherwise, there are a number of treatment options available and getting a comprehensive autonomic workup like would be available at one of these hospital centers can help give doctors an indication of which treatments are most likely to help in your case.  

I hope you'll keep us in the loop as to how you're doing and let us know any further questions you have.  
-heiferly.

[evo123]

How frustrating!  I would ring and see if they have found your results and see if they will give you them over the telephone.  It is understandable that you left.

No relevence has really been made about the bradycardia I have laying down, apart from a few 'panic' moments from nursing staff waking me up during the night to see if I was alive!!  In spite of this I have been tried on a couple of betablockers to try and control my postural tachycardia.  These work differently for different people, it is just trial and error.  These meds didn't help with my dizzyness though, the main thing that I feel helps for this for me is fluids.  The more I have on a consistant basis the better my dizzyness is.  I find if I don't drink much for a day or so my dizzyness will become worse!  

The following information refarding specialists has been taken from the dinet.org website, maybe there is one close to you:

Dr. Kiril Kiprovski
Department of Neurosciences
Hospital for Joint Diseases
301 E. 17th Street
New York, NY 10003
212-598-2375
POTS, NCS, PAF/Secondary Autonomic Failure, MSA, Orthostatic Hypotension
Autonomic Laboratory
Treats adults
    
Dr. Ludmilla Bronfin
650 First Avenue., 7th Floor
New York, New York 10016
212-532-6298
POTS & NCS
Treats adults

Dr. Max Hilz
New York University
Department of Neurology
550 First Ave.
New York, NY 10016
212-686-7500 ext. 7755
POTS, NCS, PAF/Secondary Autonomic Failure, MSA, Familial Dysautonomia, Diabetic Autonomic Neuropathy
Autonomic Laboratory
Will treat children
    
Lindsey Lee Lair, MD
35 East 35 St. Suite 202
New York, NY 10016
917-991-1992

Louis H. Weimer
Neurological Institute of New York
710 W. 168th Street
New York, NY 10032
212-305-1330
Orthostatic Intolerance (POTS), PAF/ Secondary Autonomic Failure, Multiple System Atrophy
Autonomic Laboratory
Treats adults

There are others here in this community who will be able to direct you to the best specialists/hospital who can help you.  I am in the UK and am not to familiar with US states etc.

Keep strong x it only takes for the right doctor with the right tests and a diagnosis can be made for you.

[lovemyjays]

I truly mean it when I say I appreciate your help! As for the results from yesterday.. They apparently thought they "found" the labs but they didn't so I got upset and left. I still feel pretty sick I almost passed out before just from standing up. It ***** that I don't have a diagnosis! Also this is my second baby I had neurological problems from the spinal anesthesia with my first son so this time they decided to try an epidural instead. And as far as my location I live in rockland county ny. Can I ask you a question. Since you have both bradycardia and pots are you able to have treatment for the pots? And if so is it any good? I'm just tired of feeling dizzy all the time! Thanks again and talk to you soon :)

[evo123]

Please push them.  Not many doctors are aware of POTS and it is common for sufferers to go years without proper diagnostic testing and supportive treatment.  Therefore they are sufferering more so.  I have had a nightmare of a time trying to be seen by a doctor who knows about these conditions, as have most on this forum.  

You sound like a Tilt Table Test would definately be the next step for you.  Aswell as ruling out of other conditions.  If it is another condition causing these problems, treating these would ease or even treat the dysautonomia symptoms.  I cannot stress to you enough the importance of being seen by a specialist who is familiar with this.  Every doctor I have encountered either has little or no knowledge of conditions of the autonomic nervous system unless they accompany a common illness like diabetes etc.  

I have bradycardia laying and I have POTS as I have a heart rate increase of 30-bpm or more when standing.  This is the diagnostic criteria.  See this link below:

http://www.medhelp.org/health_pages/Neurological-Disorders/Dysautonomia--POTS-Diagnostic-Criteria/show/1011?cid=196

Also, I am not sure where abouts you are, but if you would like to let me know I can help you find a specialist who would be able to help you.  If you are not comfortable with leaving your location on this board then you can private message me. Alternitavely, follow this link to speacialists in Dysautonomia:

http://www.medhelp.org/health_pages/Neurological-Disorders/Dysautonomia-Specialists/show/717?cid=196

There are treatments that can be tried for you, although they don't always work for everyone and sometimes it is trial and error to see which help you.  Here is a link to our treatments information here on med help:

http://www.medhelp.org/health_pages/Neurological-Disorders/Dysautonomia-Treatments/show/171?cid=19

There are a couple of things you can do to help yourself.  The first being fluid loading.  Increase your intake of fluids, electrolyte drinks help many of us here so it would be worth giving them a try.  Increasing your salt intake is also recomended but I would advise against this unless you are actually confirmed as having POTS.  I wear compression stockings (thigh high) too.  All these things help.

Sometimes having a baby can upset our bodies, is this your first?  And for some these things do settle alone.  But both pregnancy and surgery are factors that can cause POTS, so ensure your doctors are aware of this.  Unfortunately, many times, it is up to us to educate our doctors on this so the more you are aware the better.  I am sorry for all the links but knowledge is power and we have to be our own advocate.

I sincerley hope that a cause can be found out quickly for you, please keep me updated with your test results and how you are  x

[lovemyjays]

Thanks again for your reply. I'm actually in the hospital right now cause I felt like I was going to pass out before. My heart rate on the monitor was 43 laying down and 120 standing also my bp was 104 over 59 which is super low for me. The doctors are doing a cbc a chemical test and a thyroid test and I've been waiting for hours for these tests cause apparently they were "lost then found". I asked them about autonomic dysfunction and the doctor said there's no treatment :( is that true? Even if I have bradycardia can I be treated for pots if that's what I have? This all happened suddenly and is freaking me out.. Could it go away on its own after time? Thanks again for your help!

[evo123]

I would push your doctors for further testing.  There are several conditions that can cause your symptoms and these need to be checked for and either ruled out or in.  I would ask your cardiologist for a Tilt Table Test, this will show what is happening to your heart rate and BP when going from a laying to standing position.  Below is a link detailing this test:

http://www.heartrhythmcharity.org.uk/Documents/Booklets/Tilt%20Test.pdf

If you haven't had a holtor monitor fitted for a day or so by him I would also ask for one of these, so he can check the rhythm of your heart over several hours.  

I would also ask him to refer you to an endocrinologist as there are tests they can do to check for conditions that can cause your symptoms.  I would ask them for a full hormone panel to be done including a full check of your adrenal glands.  

Below is a link to one of our health pages detailing the diagnostic process that you may have to go through:

http://www.medhelp.org/health_pages/Neurological-Disorders/Diagnosing-Dysautonomia/show/827?cid=196

Also a link to our health pages:

http://www.medhelp.org/health_pages/list?cid=196

When one has a heart rate increase of 30 bpm or to 120bpm when going from a laying to standing position this may also indicate a form of dysautonomia called POTS (postural orthostatic tachycardia syndrome).  Although this is rare and all other causes have to be ruled out before a diagnosis can be given.  

Hopefully your doctor will be able to get to the bottom of this for you and you will be able to enjoy your baby without having to deal with these symptoms you are experiencing.  Please keep us updated and don't forget we are here if you need any support and advice x

[lovemyjays]

Hi! And thanks so much for your help!! My heart rate is in the 50s laying and goes up to about 120 just from standing and my bp stood the same laying and sittng but went up a little when I stood up. They also did basic blood work but I had a thyroid test too and I believe a cardiac enzyme test which were all normal and I still don't know what form of myopathy I have I'm supposed to schedule an appointment for a muscle biopsy but I'm having issues with my insurance right now.All I really know about the myopathy is that the doc said I barely have it. I had went to the cardiologist a few months ago and had more tests there *before this problem happened* and was diagnosed with pvcs. I have an appt with the cardio on wednesday so hopefully he'll repeate some tests. Do you know what tests I should ask to have done? Thanks again for your help :)

[evo123]

Firstly, may I congratulate you on the birth of your new baby :)

I to have had c-sections so I know how scary and painful they are, you seem to be dealing with a lot right now.

My heart rate is low when I lay down and high when I stand.  The lowest (on record) has been around 37.  

When you had your bp and hr monitored laying and standing do you know what happened to your heart rate when you stood up?  Did it increase?  If so, by how much?

Do you know what tests were done?  Many times the ER just take basic bloods.  If they have just checked the obvious causes there are several more tests you should request.  Also do you know anymore about the form of myopathy you have?

I am sorry for all the questions, but a little more info may help us here to help you.  

x