Undiagnosed but symptomatic for over a year. Demoralizing brain fog every day and seeking guidance.

[eaudire]

I've been reading this forum for many months now and have only just decided to post. I just wanted to say I admire you all so much for your fortitude and bravery in dealing with such a difficult condition. I know we're not all dealing with exactly the same symptoms or underlying conditions, but the fact that most of us have struggled to describe our symptoms accurately and have had successive inconclusive lab tests suggests to me that this might be a good place to seek opinions on my condition and guidance for next steps.

At the outset, I just wanted to say that I haven't been diagnosed with anything, for a number of reasons: 1) After a series of unrevealing medical tests, my neurologist referred me for a TTT about a year ago, but I balked when I saw how little of the cost my insurance plan would cover. That, coupled with my optimism that I'd recover within a year and skepticism that a positive Tilt test would actually help pinpoint the underlying cause or result in effective treatment, caused me to put it off. 2) I'm not seriously physically incapacitated by this condition, for which I'm grateful, so I can't really justify not working. The persistent brain fog and general malaise make it extremely difficult to do my writing-intensive job, though, and I don't know if I can handle another year of sobbing furtively in my cubicle multiple days per week. 

Anyway, here's the story: the second week of March 2016, I sensed what felt like a couple of off-rhythm heartbeats and felt suddenly dizzy one day at work. I didn't really think much of it, but remembered that I had started taking Vitamin D supplements two weeks prior and realized that I had (unwittingly) been taking quite a high dose (10,000 IU/day for about two weeks). (This apparently isn't high enough to cause toxicity and every doctor I've seen has rejected it as a possible explanation, so...shrug.) I stopped taking them immediately when this happened. The next day, I returned from lunch with my heart racing, very shallow breath and nausea, so I went to the ER. My HR was 140 at the time I was admitted to the hospital. I had a comprehensive metabolic panel done, which was unrevealing. The nurse noticed that my HR increased abnormally from the prone to the upright positions (although this was never actually included in my final report). I was essentially told to drink some water and chill out, and to follow up with a cardiologist, which I did. My ECG and a 24-hour Holter test showed nothing, and the doctor reassured me there was nothing wrong with my heart. (However, the Holter test did show 6 episodes of tachycardia (>120 bpm) lasting 4.2 minutes total on a day when I was mostly sitting and did no exercise. The doctor didn't comment on that). Then I went to a neurologist and was given a brain MRI (everything fine),  B12 test, lyme test, thyroid test, tests for various inflammatory autoimmune disorders (lupus/rheumatoid arthritis), vitamin D and celiac (all negative or normal). She then ordered the Tilt test, which I've yet to do (although I'm convinced, based on my own poor man's version, that it would show something, at least on some days of the week).

During this time, my symptoms have been:

-Lightheadedness (when my symptoms were at their worst, my head actually felt heavy like a bowling ball moving out of synch with the rest of my body; I basically felt/feel like the blood is being drained from my head - I felt an actual draining sensation at one point when by symptoms first started.)

-Insomnia (this has mostly improved, but for a while it was absolutely MISERABLE. No matter how tired I was, I physically couldn't sleep - it was like my head wasn't receiving the signal to fall asleep; it felt like a physical blockage. Now my sleep is shallow and I don't sleep as much as before, but it's better.)

-Blurry vision (it's generally always somewhat blurry, but noticeably worse in the evenings, like my eyes are having a hard time adjusting to dimmer light.)

-Rapid heart rate (It used to be so fast I could feel it vibrating against the mattress. Now I probably vacillate between 65 (very relaxed, lying down) and 100 (standing up after a long period of sitting)).

-Nausea (probably the most greatly improved symptom)

-Urinary urgency (very occasionally get passing urges to urinate when I don't actually need to)

-Brain fog (it might be slightly better now, but it's honestly hard to tell sometimes. I feel like my brain is constantly coming up short in every task.) 

I guess the most remarkable thing to me is that these symptoms - while they sort of wax and wane - don't occur in the form of episodes or flares. They've pretty much been constant since everything went off kilter last March. I think what I'm really describing is the absence of internal stability rather than the presence of specific symptoms.

Symptoms I don't experience:

-Faintness (I've never once fainted)

-Fatigue (I feel like crap, but that's different from true fatigue that prevents you from getting up to do things - this is why I kind of doubt this is autoimmune-related.)

-Gastrointestinal problems (apart from the nausea, I haven't had any issues with this.)

-Pain or headaches

There's a lot more I could say, but this is getting very long and I apologize for the rambling. Over the last year, I've tried to go to the gym fairly regularly (3x a week, only treadmill running for about 30 minutes), but I have a sedentary desk job, which just makes it feel like I'm playing catch-up all the time.

I'm a 29 year-old female and have no other known health problems (healthy height and weight, balanced diet, drink water regularly - although I didn't used to before this happened). I was seeing a therapist for some low-grade anxiety that I was experiencing in connection with my job and relationship, but I REALLY hesitate to attribute this condition to psychological factors (I've been much more stressed at other periods in my life and didn't experience POTS-like symptoms).

Anyway, things seem to be improving so slowly that some days I wonder if they really are improving. I just don't know if this is normal or what I should expect. I guess we're all in the same boat there, but I'm not sure where to turn. I live in NYC and my insurance won't cover me out of state, so I'd have to see an in-network doctor here. Should I bother with the Tilt test and start trying a bunch of medications for symptom relief, or do you think I'll just be told to wait it out? How useful is the Tilt test really if your symptoms are relatively subtle like mine?

I guess that's it for now.

[DizzyGirls]

My daughters had a tilt table test at the Autonomic Clinic at Stanford University, but when we went to see our actual cardiologist, he said he didn't like them.  In fact, said they were barbaric and that it wasn't necessary to see if someone had POTS.  Well, my girls would agree to the barbaric.  We discovered this AFTER we had made the trek to Stanford.  You can do a poor man's tilt table test at home.  You take your pulse lying down, I think you wait a few minutes (5 maybe?) then sit up, and, finally, while standing (taking your pulse initially, then at 2 minutes, 5 minutes, longer if you like).  My oldest daughter (21) didn't used to have POTS, but it sort of came on gradually and then all of a sudden about 2 years ago, she was hit hard.  Blurry vision, never passed out, but high heart rate.  She's on Propranolol.  Helps greatly! 

[DizzyGirls]

Oh, forgot, the brainfog.  That's my other daughter.  She's got POTS, too!  Horrible brainfog!  Terrible time concentrating if there is any other commotion in the room.  Trouble finding her words.  Very smart girl, just takes her brain a moment to kick in and can't focus well.

[eaudire]

6 hours ago, DizzyGirls said:

Oh, forgot, the brainfog.  That's my other daughter.  She's got POTS, too!  Horrible brainfog!  Terrible time concentrating if there is any other commotion in the room.  Trouble finding her words.  Very smart girl, just takes her brain a moment to kick in and can't focus well.

Hi DizzyGirls,

Thanks for your replies. I've done a poor man's TTT and it confirmed my suspicions, so this is indeed one of the reasons why I'm not really sure why it's necessary to have the actual test done. A few questions for you:

1) Why do you say the test was barbaric and what exactly did it involve? (I've never fainted from POTS and don't have pain or gastro issues, so I guess I never imagined that I would have a terrible reaction to it, but maybe I'm wrong.)

2) Were the results of the test meaningful in any way? Did they eventually help to pinpoint a cause or suggest a course of treatment?

3) You said one of your daughters was taking Propranolol - would you mind sharing a little more about her exact symptoms and how she's improved? (I was prescribed this ages ago and didn't end up taking it.)

Many thanks again for responding.

[DizzyGirls]

Hi eaudire!

You know, it's funny, our neurologist wanted to get a tilt table and the cardiologist that he was working with (the University was trying to set up an Autonomic Clinic) was absolutely adamantly against it.  "Absolutely not!" he would say.  "It's barbaric!"  I'm not sure what HIS reasonings were against it, but my daughters would attest that it's one of the worst tests they have had done most likely for the fact that it makes any POTS symptom you have exponentially worse.  My youngest had a panic attack, her bp shot WAY up and it made her so lightheaded, too.  My oldest, she almost passed out and lingered in this state for quite some time, all the while they were watching her nystagmus in her eyes because they had never seen anybody where the test triggered such a bad case of vertigo (both girls battle this 24/7).  We actually have not gotten the written report for the girls' autonomic testing.  I was requesting their records and that was the one thing that I really wanted and it was the one thing that they didn't send!  I'll have to request it again. 

The reason that we wanted to go through with the testing is that we needed a diagnosis.  We have too many doctors that we see and to have the only diagnosis be that of what I, as their mom, see doesn't hold much weight.  Even though it was me who did hound their PCP to get us to Stanford because I knew they had Ehlers Danlos and POTS.  But, to have a Stanford doctor say, without a doubt, that both girls have EDS and POTS, was tremendous.  It has come in so handy.  I don't know how many times we've been asked "who said they had Ehlers Danlos and POTS??"  Like none of them ever believe us, but when you say Dr. Jaradeh from Stanford, they say, "oh, ok". 

My oldest has a whole host of neurological symptoms (tremors, spasms/dystonia, migraines, headaches, vertigo, numbness, tingling, intense pain (bone, muscle, nerve), poor circulation, too much circulation, lightheadedness) from cervical instability that originated from her EDS.  But, a couple of years ago, she was trying to take one college class at our local community college, and on the second day of class, her vision was so blurry and she kept feeling like she was going to pass out, had a horrible "ice pick" headache (think it was a severe migraine).  We went to the ER, which at that point, the doctor said that she definitely had a problem that was much bigger than a little community ER department could figure out.  I never found out what her hr was that night, but from then on we had used a bp machine to measure bp and hr.  Bp was low (low 90's over 60s) and hr was up in the 120s while sitting and would get up to around 156 when she would stand up. Her symptoms were lightheadedness, migraines, headaches, heart palpitations, near syncope.  Eventually she was put on Florinef which boosted her bp up a little and made her not pass out in the shower, and then a few months after that, she was put on propranolol (10 mg, once daily)  (a beta blocker) which GREATLY helped her hr.  She has a normal resting heart rate in the high 90's and feels fine.  When they've tried to get it lower, she was having worse headaches.  So, we leave it at around 95 (give or take a little).  She is going to be having a spinal fusion at the end of July due to ligament laxity and muscle weakness from EDS.  They will fuse her from C3 to T3 with a possibility of having to go all the way up to the occiput (back of the skull).  She'll have plates, screws, rods, the whole nine yards and be in the hospital for at least a week. 

I hope this helps!  Feel free to ask any more questions when they arise, always here to help!!

[WinterSown]

I had the TTT and I didn't faint. I still was diagnosed with POTS. 

My neurologist told me to exercise my brain everyday as neurotherapy to lift the fog. So, each day I learn something new, or I make something with my hands, write poetry or fiction (haikus are clever and quick), I am allowed to adult color but only if I make my own line drawing first, etc. In other words, she is helping me create new pathways to restoring my short-term memory loss and help blow through the fog. It is working. She said it would not be fast and that is true, but each month I can do a few more things than the month before. Today, I am challenging myself by making a new recipe from a cookbook I bought at the thrift store. The first challenge is getting to the store to get the stuff and come back home with enough energy to make it. I hope to succeed. The best part about this is that it doesn't cost an extra nickel from the budget. 

 

[BuffRockChick]

Only 30% of people with POTS faint.  I've only fainted twice, once after standing for 10 minutes, pulse was 120.  The other was after standing up and walking.  Both times I fainted I didn't have presyncope and I had been drinking water instead of electrolyte drink.  I've only fainted AFTER learning about POTS, interestingly.  

I have my tilt test next month.  Need the doctor diagnosis to get medication treatment.

[eaudire]

Hi ladies,

Thanks so much for responding - I did read that the majority of POTS sufferers don't actually faint. I've certainly experienced the postural heart rate increase without even really feeling faint.

I should probably clarify that I'm not hesitant to do the TTT because I'm frightened of how I'd react, but because I guess I'm not sure how helpful a positive diagnosis would be in what seems to be a relatively mild case like mine, especially when I've already done the poor man's version (which was confirmed at the ER). I say "mild" because, if I didn't have to do a mentally taxing job, I'd still be able to function reliably and do everything I normally do. I'm  short of breath and my head feels like it's full of cotton, but I can cope with that stuff, even if it's not pleasant and pretty much constant. Basically, I'm a little concerned about spending a bunch of money to do a test that will result in spending more money on medications that don't actually help and might even do long-term damage (?), when I can basically walk/sleep/eat normally. It seems like automatically starting a regimen of Florinef or Midrodrine might be a little excessive. Also, I've increased my water intake and go to the gym regularly, and nothing I actually *do* in the short-term seems to have any impact  Any improvement I've experienced has been so gradual that I question whether it has even taken place. At the same time, I do feel moderately crappy all the time, so it might be good to actually see a doctor who has monitored a few cases of POTS to get his/her opinion on my case. 

I guess my actual question is (for DizzyGirls and WinterSown): did your TTT lead to other, more informative neurological testing? Or did your doctors just have you try out the typical course of treatment for POTS - Florinef and/or beta blockers and/or salt tablets and exercise - to see if it worked? Have you seen an autonomic specialist and are there any specific additional tests that they usually do that a regular neurologist wouldn't necessarily think to recommend? 

For BuffRockChick: Best of luck for the test next month and I hope you get some useful information that will help to relieve your symptoms. Out of curiosity: do you experience symptoms more or less constantly, or do you ever get a break? (For ex., when lying down or sitting?) Have your previous medical tests revealed anything that might suggest a cause? (Sorry to bombard with questions - just trying to get an idea of other people's experiences.)

For WinterSown: The brain exercises sound intriguing. I've wondered, though, if the problem is decreased blood flow to the brain and our brains are not actually defective, how exactly these work. For example, when I'm trying to work through a difficult problem at work, no amount of thinking or focus actually seems to direct the blood to my brain. I don't feel the same physical sensation as before when I'm trying to think hard, if that makes any sense. I just feel a blockage. Do you experience this as well? Do you find that your head  feels like it's physically "working" better after doing brain exercises?

Thanks again for your help at a difficult time. Wishing you all relief from this and lots of support/care in the meantime!

eaudire

 

 

[BuffRockChick]

I have POTS symptoms constantly when upright with the exception of getting some relief at night.  However, I get intense flare up of symptoms - during which, I've acquired inappropriate psychiatric misdiagnoses.  My quest for diagnosis is to set my medical record straight so when I get a flare up I don't get comments like "maybe it's your bipolar coming back."  I am assuming TTT will find me to have high norepinephrine levels in upright position because my most constant and most troubling symptom is irritability.  I am planning to pursue methylphenidate for treatment because when I was on it for ADHD (long before I figured out POTS), I spent most of the day standing.  Caffeine reduces my symptoms, but not as much as methylphenidate did.  I'm also going to start an exercise program immediately after getting the tilt test done. 

I get "brain fog" when I'm standing and with blood pooling.  It can get so bad that I'm not able to speak.  It exacerbates my ADHD symptoms too.