POTS? maybe?

Symptoms and Treatments
1

So, my doctor left early on mat leave, and no one is covering her until April 1st leaving me with only walk-in clinics until then. NS office gave me a quickie consult by phone but won't see me till April 24th. I'm supposed to return to work March 30th and need to make a decision before then, so help me out.

Dizziness returned with a vengeance 3 weeks ago (so 4 mos post-op) I can pin point the exact moment it returned: standing talking to a friend, turned my head, then my body to walk away wave of dizziness hit hard, had to grab a wall. I've been dealing with it since.

It's probably better described as light-headedness than vertigo type dizziness.

I'm light-headed all the time. Walking, I lose my balance, I stumble. I feel awful. I'm tired, but I can't sleep properly. I can't concentrate.

I work with small children and their mothers - people will notice. I'm worried.

After discussing with NS' office, I realized it is much worse after standing several minutes, and made the POTS connection. I downloaded this neat little heart rate monitor app for my phone, and while I realize it's not the most accurate (in part b/c of my Raynaud's) my resting HR is now btw 85-90 and standing between 105 and 115 (once I clocked it at 135) Today, sitting I was feeling particularly light-headed and got a reading of 105 sitting completely still.

So, I can't get any help from my doctor until after I'm supposed to start work. I'm not really sure it's a good idea to go back to work like this. If it is POTS, I've read you can manage the symptoms with water and sodium intake - is it a good idea to self medicate in this way to get myself through until I can get a proper diagnosis? I managed to get a requisition from the walk-in doctor for a CBC, thyroid work-up, EKG etc, so they have a baseline before I go OD'ing on NaCl.

So, those with POTS, advice?

2

Hi, Claire, I appreciate your dilemma. This information sheet about symptoms states specifically that self-diagnosis is not the way to go with POTS, in case there is another health problem at work: http://www.dinet.org/index.php/information-resources/pots-place/pots-symptoms

So I hope you can be evaluated soon. There is some basic management info here, but it has to be individualized: http://www.dysautonomiainternational.org/page.php?ID=44

I hope members will give their input, too.

3

Chicken Bullion is my favorite.

But yeah the basic work up sounds like the ticket. We seen a lot about POTS on this site, much better than strangers on the internet lol.. The reality is that POTS almost only occurs if CMI is compounded by retroflexion of the odontoid, basilar impression, basilar invagination, with or with out cranial settling,.

With this specific pressure the patients can be at risk of Postural Orthostatic Tachicardia Syndrome (POTS). so that whenever the position changes from supine to sitting, or from supine to standing, the heart rate accelerates drastically; in its frantic frenzy, the heart fails to move an adequate amount of blood, and the blood pressure drops; inadequate blood pressure to the brain causes debilitating dizziness, and the patient has to lie down supine again. Its very unlikley that it would be a post operative complication. In any event it is pretty easily managed. Last numbers I saw for pots with CM were in the single digits per thousand

That is not to say there isn't a explanation for your dizziness. Vertigo type dizziness doesn't sound like POTS. POTS usually pretty clear. instead of holding on to a wall you are usually trying to catch your heart that seems to be jumping out of your chest.

4

Failed to mention at walk in, she put on the blood pressure cuff and had me sit, stand, sit, stand and took several readings and said "wow, look at that, every time you stand up your blood pressure drops and your heart rate increases. Strange."

I guess the question is TJ1; those compounding issues you mentioned, would they have been clear on an MRI post-op? I had one 6 weeks after, and he declared me fit. Or could something have happened in the meantime? The nurse from the surgeon's office said they'd probably send me for another MRI but they were not concerned so she said they'd delay it to coincide with the end of April appointment.

To be clear, I'm not trying to sidestep a proper diagnosis, just cope until I get one.

Thanks for the tip about bullion. Discovered I don't like miso. :)

5

I know you're not trying to sidestep anything... I'm just hoping you aren't panicking Those issues would have been very clear on an MRI.

More likley is Orthostatic hypotension. Post operativley the most common cause for Chiarians is either dehydration or depending on the amount of pain medication that has been taken, reduced production of cortisol and/or aldosterone. Its passes in time. If one has taken steroids it can also happen

Autonomic neuropathy from nerve damage or pressure is another possibility occasionally there has been some nerve damage, as the swelling goes down postoperative at about four - six months the pressure goes off of parts of your brain stem. The effect is like having a leg go to sleep from sitting and then standing up. Think of the stages that leg goes through "waking up" Its the same thing only take weeks/months instead of minutes.

I'm hoping by your NS appointment on the 24th, Spring Weather will be the main topic of discussion and all this will be behind you.

6

I had decompression surgery in 01’ and was diagnosed with epilepsy in 09’. This past Oct. while teaching 1st grade special ed. I had a pretty bad seizure. Since then I’ve been horrible health wise. I found out 3 months ago I have POTS and peripheral nerve damage. For the pots I’m on inderal 3x a day 10mg, wear compression stockings, increased water and salt intake and still nothing has changed, only worsened. I drop usually by a minimum of 20 when standing, sometimes the machine can’t read it and it has to be down the old fashioned way. Today my lying HR was 124 and standing was 159. I saw a cardiologist yesterday and he suggested another med to increase my bp and to wean off the inderal bc I’m so sleepy but I can’t sleep. I fell down a flight of stairs today because my vision got blurry so fast and I was lightheaded. I’m seeing a pots specialist in May and having an occipital nerve stimulator put in.
It sounds like you have pots too as it’s more common with chiarians and 80% are women.

7

Thanks for the replies.

Even with orthostatic hypotension they recommend water/salt so it can't hurt. Generally we keep a low-sodium diet in this house so I figure bumping up my intake to twice my normal daily is still pretty low in the grand scheme of things. Have been drinking MUCH water. So I'm definitely not dehydrated.

Blood tests and ECG results are in, they called in the replacement for my doctor early so will get to see her next week.

8

Salt, Fat, Alcohol, and caffeine are basic food groups in my house. So I can relate a bit, just not in a healthy way. Anxious to find your results. The idea here is take things OFF your list of diseases and symptoms not add - right???? Hang in there