Back to square one - sorting symptoms - could use some help :)

[DizzyGirls]

It's been a rough past few months for my family.  Dealing with oldest daughter's symptoms has been so extremely challenging.  I was just rummaging through my brain and was hoping for a little help in sorting symptoms.  So, here goes!

Recently diagnosed with a pseudotumor cerebri - basically too much spinal fluid causing pressure on her brain.  Diagnosed by lumbar puncture.  Saw doc yesterday and started daughter on Diamox.  That explains the worsening headaches and migraines, blurred vision (unless her POTS is acting up), squiggly lines in her vision, pulse beating in her ear, fullness in ear, pressure in neck.  Ok.

Blood pressure has been strange.  Some of it can be explained by some melatonin that she was taking.  Not supposed to cause low blood pressure, but it does.  Had to stop that.  Bp had gotten down to about 70/53, p. 164.  So, that is leveling out some, but still some strange fluctuations in bp and hr that didn't used to be there.  The doc we saw yesterday said that if her bp was dropping when she stands, then it's not POTS.   Thought POTS was mostly a rise in heart rate, BUT, that it was possible for the bp to drop too.  Can someone clarify that for me?  Also, hyper-POTS.  Is that when the bp is high and the heart rate is high, or is that when you have constant adrenaline surges?  Think I've got myself confused over the last couple of months.  Thought I had this all figured out, but I know some of you have been doing this for a very long time, so I could use your help !

There was also a recent post about someone, http://forums.dinet.org/index.php?/topic/27866-back-to-square-one-sorting-symptoms-could-use-some-help/&_report=1734 We've got an appointment a week at a major University for the next four weeks and I am not sure how we are going to do this.  Any thoughts?  We are exhausted!

[yogini]

Many/most of us with POTS are looking for a cause of our symptoms and can't seem to find one. Our only clue is a failed tilt table test and all of our other tests come back "normal".

It's interesting that your daughter was diagnosed with excess spinal fluid.  The spine is a critical part of the nervous system.  Without knowing anything about your daughter's particular condition (and not being a doctor) I could see that an issue with spine could cause the whole body to go haywire.  Any of the symptoms you describe, including numbness, POTS or POTS like symptoms, could be related to an issue with the spine.  I would do research on this condition to see what symptoms it causes and also research the treatments.  POTS is very amorphous and hard to treat - if you have another known condition it might be easier to focus on treating that first.

You're right by the way, you can have POTS without a drop in BP.  The main Dinet page has good info about different types of dysautonomia which you can give to your doctor.

 

[Katybug]

Hi DG!

So, first, I agree with yogini that I wouldn't dismiss the spinal fluid compressing the spinal nerves and brain as only causing the symptoms you listed. I would think that could be a much more complex issue that may have been damaging a variety of neural tissue that will take some time to heal. Just like other soft tissue, nerves take time to heal so I will keep my fingers crossed that some of your daughter's other symptoms will gradually improve after the Diamox has worked it's magic.

POTS is a rise a HR. But, you can have more than one type of autonomic dysfunction co-morbidly. Orthostatic hypotension or Neurocardiogenic Syncope (NCS) are types of autonomic dysfunction that refers to low bp. I will also note that there seems to be a bit of a "spectrum" for lack of a better way to put it. I'm diagnosed with POTS. But, I also started out this rodeo with consistently low bp (not just standing). Over time the weirdness with my bp has changed several times but never long enough to dx an additional form of dysautonomia. For example, once we got my bp up generally, then for a time I did have some orthostatic hypotension but the episodes were hard to catch on a monitor and they were fast....an extreme dip for only 3-5 seconds then it would recover. But, of course, a 40 pt drop even if it recovers in seconds is enough to make you feel awful. This lasted for only a few months, then seemed to taper off. I also had a period of very narrow pulse pressures. Again this tapered off after a few months. I currently am having some wild swings from 20 pts too high to 10-15 pts too low but the swing itself makes me feel awful. We (my POTS neuro and I along with help from my cardiologist ) treat these issues as they come based on signs and symptoms and don't worry so much about labeling it since this is a feature that remains inconsistent for me.

As you describe the tremoring/flushing episodes in their entirety, it very much reminded me of reading about a significant mast cell reaction. Mast cell reactions can range from simple rashes to full blown anaphylaxis with quite a range in between. That might be something to think about.

Finally, an ENT that I went to early on in my illness gave me some sage advice. He said he could recognize from looking at me that I wasn't well and explained what was happening in my ear (a middle ear muscle spasm). He also said that while he didn't have the "light bulb" moment that said "this is what she has", that I was doing the right thing. In fact, that I was doing what doctors do to narrow down a diagnosis.....look at all the symptoms, ask what could it be, test for the things that come to mind in order to rule things out and narrow the field. He said that in my case, because of the complexity and wide range of symptoms,  going to each of the specialties was unfortunately part of this process but that I should keep going...keep asking...keep trying...and treat symptoms in the meantime.  I can't say it any better than he did.

I'm keeping your family in my good thoughts. I know it's hard.

Katie 

 

Edited September 10, 2016 by Katybug

[DizzyGirls]

Thank you both for your words of wisdom!  I won't dismiss her nerve issues, I'm leaning toward the fact that this may, indeed, be caused by the increased spinal fluid.  I gave her a whole Diamox 250mg last evening (considered a low dose), and I could hardly keep her conscious.  She kept passing out on me.  Propped her legs above her heart, etc. and she eventually snapped out of it, but took a while.  Also triggered a big migraine.  What the heck?!  I know she needs it, so I'm going to quarter the pill and try 1/4 at a time to let her body adjust to it.  She takes a lot of meds already, so I'm sure that is playing into it.  My youngest was tried on it about a year and a half ago and she had the same reaction.   The headache doctor that we see did a cheek swab test when we were there and it will be processed to see how she metabolizes medicines.  Might be interesting.  I, myself, am allergic to sulfa drugs.  I got a butterfly rash across my cheeks when I was younger.  So, that being said, we are going into this with some fear and trepidation. 

Had one more question...just noticed that Diamox is actually a diuretic.  My daughter takes salt tablets and needs all the fluids she can hold on to.  I am wondering if the salt and extra fluids could actually be causing more harm than good when it comes to the pseudotumor cerebri (excess spinal fluid).  Oh my goodness, what if the treatment for one condition is causing the other??!! 

[Amyschi]

Hi DG, Wow, I was sorry to read of your daughter's additional diagnosis.  Hope she is doing better today.  She is certainly dealing with a lot.  I bet that extreme reaction to the Diamox really scared you.   Will send good thoughts your way.   The pseudotumor cerebri is probably causing a lot of problems, and wouldn't it be something if that is the "smoking gun" that, with treatment, will help to bring her symptoms under better control?   I would check with her doctors as to whether the diuretic is counteracting her other meds to increase volume, as you said; that is tricky.  Maybe they will know best how to do that.   I don't know, of course, but I would imagine treatment for the pseudotumor cerebri will take precedence.  Best of luck with all this.  

[yogini]

I would mention the constant fainting and lightheadedness to her dr right away. Is it caused by the spinal issue itself or the meds - and if so is ther another med that might be better?  Also make sure that you clear with your dr or pharmacist adjusting the dose of any meds.  Even just changing the dose of a medication can cause symptoms.

It does seem counterproductive to be taking salt tablets at the same time that you are taking a diuretic. I would be sure to mention that to your doctor too.

You may want to search for other patients with spinal fluid issues - either here on this forum or on the web.  The average POTS-related numbness or lightheadedness might be very different than numbness or lightheadedness caused by spinal fluid. Just want you to get the most relevant advice tailored to your  daughter's situation.

Edited September 11, 2016 by yogini

[Katybug]

Yes, Diamox is a diuretic and the loss of fluids is a concern. My docs and I had discussed Diamox long ago and almost trialed it. But then I found out it was sulfa base and I'm allergic. 

I think yogini is correct. Please check with a doc or pharmacist as not all meds can be cut up and still have the same efficacy.

The passing out must have been scary. This is so very complicated. ?