Tilt table frustration

[Starbug]

So, I've lurked on this site for years trying to figure out what's been happening to me.  Thanks to all of you who have posted so much helpful info!  Anyway, I finally was able to see a recommended neurologist trained at the Mayo Clinic who diagnosed me with primary dysautonomia.  I have nearly every symptom listed on the Wikipedia page for dysautonomia and have been in the past diagnosed with Chronic Fatigue and Fibromyalgia.  These symptoms actually go all the way back to my childhood; I hated the summer heat as it would make me feel nauseated and faint and my stomach always hurt. 

Before the neurologist I was told to increase salt and water.  Helped a bit.  Then my primary Dr. put me on a low dose of Midodrine.  Some improvement for a while but then the medicine didn't seem as effective.  Another thing was that until I began Midodrine, my pulse was very low.  Like 60 BPM while sitting being normal.  After Midodrine, I started having tachycardia.  I had been taking Metoprolol with Midodrine, but at the time while resting my pulse would go down into the high 40s (I was only on 12.5 mg Metoprolol).  My Dr. kind of freaked out and I tried discontinuing the Metoprolol, but while standing (or I should say trying to stand) my pulse went up to 160.  Back to 12.5 Metoprolol. 

My neurologist increased the Midodrine to 10 mg. 3 times a day.  I felt better for a few weeks.  Then, slowly and depressingly, I became basically unable to function.  Again.  Back to (literally) crawling to the bathroom, barely able to get a glass of water (ever crawled while holding a glass of water?  Dumb question, I'm on dinet.org after all!  But is is kind of difficult, especially when my cats all come over to greet and groom me. )  My husband has had to do almost everything around the house.  He's great but I can't stand how things have gotten.  OCD perfectionism overload.

Now the Tilt Table test.  So you discontinue all meds 36-48 hours before the test right, to make sure you get accurate results.  Here's where it gets weird.  I got better OFF THE MEDS.  A LOT better.  So much so that my pulse was just a little elevated during the test and my BP didn't bottom out.  I even felt fine, just the normal tiredness.  My neurologist tells me according to the test my autonomic system seems to be functioning quite well.  WHAT

He arranged for me to try Northera.  I'm afraid to.  I seriously feel better now off the meds than I have in 3 years.  I only started Midodrine last August.  I don't feel good; still exhausted and brain fog but definitely better than before I started any of the medications for my BP.  I mean, I can stand up for an entire shower.  You guys know what I mean.  Only thing now is that my pulse rate is always a bit elevated, while before I always had a slow heart rate.  I get a bit Tachy at times.  I have no idea what to think. 

I am probably going to be able to see Dr. Grubb sometime in April or May.  I think I really need someone with a different perspective to take a look at all of this.  Also, I saw an endocrinologist who specializes in thyroid and adrenal disorders (I'm hypothyroid).  She takes a more holistic approach and tests for more than TSH so I'm hoping that will add to this puzzle.  I just have to do some hoop jumping to get my insurance to OK the tests.  Fun times!

Sorry for the novel, but if anyone has any insights or suggestions I would so appreciate hearing them.  One of my physicians always reminds my I have "idiosyncratic" reactions to meds.  In other words, they do the exact opposite of what they are supposed to do or my body just responds really weirdly.  And now that the Tilt Table tests says I'm "OK", I feel kind of hopeless.  I mean, that is THE test.  How do you argue with THE TEST?  The expensive test.  If I'd have had it just 5 days earlier, I can guarantee the results would have been WAY different. 

Thanks to any who have read this far.   I know there are so many out there trying to balance their meds and I hope all of you find something that helps you.  Hoping maybe someday I can be of help answering questions for others on here.

[MomtoGiuliana]

Welcome to the forum.  Good that you may see Dr. Grubb to help sort through your situation.

I am also hypothyroid and there are others here who are as well.  It's not that uncommon anyway so there may or may not be a correlation, but for me, my POTS symptoms seemed to appear in earnest at about the same time my thyroid problems developed.  It could be that the low thyroid just tipped my autonomic nervous system over the edge.  My symptoms became severe, however, during pregnancy and even worse post partum which is when I was finally diagnosed.

As far as the tilt table results, it is definitely possible for POTS symptoms to vary from day to day.  Someone could "pass" the TTT yet exhibit POTS symptoms at other times.  I know my specialist told me that he bases diagnosis on also just checking orthostatics the old fashioned way in the office and listening to a patient's symptoms.

That is interesting that your symptoms improved when you went off the meds.

Hope you get some answers and feel better soon.

 

[Starbug]

Thanks for reading my mini novel!  Good to know Dr. Grubb is so well respected here.  And it's also good to know the TTT isn't the only thing a good specialist takes note of.  I was feeling very discouraged.

I'm sure hormones, including thyroid, are implicated.  Although I've always had symptoms of dysautonomia, chemo I had years ago finally caught up with me and caused ovarian failure.  That's about when the symptoms became unmanageable.  My neurologist also told me that where I had radiation therapy is the place that many nerves important to the autonomic nervous system go through so they are most likely damaged. 

Thanks so much for the encouragement and relating your experience.  It's very helpful.

Hope you are feeling well enough to enjoy nature, one of my very favorite things too.  Nothing better than walking in nature and feeling your cares slip away for a while.

[Guest KiminOrlando]

Hi Starbug. Frustrating is the name of this game. I know they tell you 36 - 48 hours is enough time to be off the meds for that test, but sometimes I think some meds stick around longer than that, of course, I have no medical proof. 

I'm on Northera and have been having more headaches lately, so I thought I would stop that med and see if the headaches got better. They didn't, but I was off the med for 2 weeks before I tried to pass out in the shower again. Something kept that from happening during that time frame. Makes me wonder if it was residual Northera. I'm back on Northera because my heart rate went back to 130 and I had to take a break and rest before I could finish my shower. Experiment over.

Northera has been good for me, but it does elevate your BP. If your BP is not terribly low right now, I can understand your concern.  Part of their protocol, at least when I started, was to make sure you had a good BP machine and get you to check it several times a day keeping a log. My doctor had me put the machine on my nightstand so that I checked my BP before I ever even sat up. He wanted to make sure it never got too high. I am on a relatively low dose at 200 mg 3x a day. 

If you are concerned, talk with your doctor. Northera is a big step. I was nervous when I started it because it came with so many warnings.

And if you get some info about alternative treatments for hypothyroidism and adrenal insufficiency, I would be interested. I'm in that boat too.

Good luck.

Kim

[Lily]

If you feel up to it, I don't see anything wrong with waiting to see Dr. Grubb before trying any new meds.  Don't forget to tell him about the idiosyncratic reaction thing, with examples.  Might be a good idea to write it all down ahead of time and take it with you, in case you are having brain fog on appointment day.

[yogini]

I am not sure how long it has been since you stopped your meds. As others have mentioned, dysautonomia symptoms change every day -- you have periods of good and bad.  If you feel better right now, it might make sense for you to stay off medications  until you start to feel sick again.  Meds have side effects, which could've been part of the issue.  Monitor yourself and you can change your mind at any time.  

Keep the doctor in the loop on your decision -- if you suddenly start to feel sick again you'll need his help.  Some medications can be taken as needed - and maybe you can ask him about that option.

 

[Starbug]

Sorry I haven't responded to all of your helpful suggestions.  My computer decided to give me the BDOD and I'm hoping to have it up again soon.  Borrowing my husband's right now.  To Kim, I'll let you know what I find out about alternative treatments for hypothyroidism and adrenal insufficiency.  It may take a little bit; my insurance is requiring me to find a personal care physician in network to approve the blood tests.  My physician is out of network and his approval is not sufficient.  Just every time I call a physician I am interested in they are not accepting patients. 

Lily, thanks for reminding me to mention to Dr. Grubb my idiosyncratic reactions to meds.  That is important.

Yogini, I was planning on staying off the meds, but Saturday my hypotension and dizziness came back with a vengeance.  So, I started Northera yesterday.  See how it goes.  BTW, I love stretching and pilates.  Have a recumbent bike we just need to put together so at least I hope to get on the right track again exercise wise.  When I'm not so dizzy, walking will be back on the list.  I wish I could do water exercises, but chlorine badly aggravates my asthma.  Going to have to look up anti-gravity yoga though; never heard of that. 

Kind of funny though.  Today my neurologist had a nurse call me to tell me to call him when my blood pressure goes lower than 100/70.  Umm, just sitting down my "normal" BP is anywhere from 85/64 to 90 something over 70 if it's a bit higher that day.  After I stopped the Midodrine I had "normal" higher BP for about 3.5 weeks, but I'm back to MY normal now.  So, calling him tomorrow.  Always something, right?

Thanks you guys.

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