Tiredtoday

Thanks everyone! So much in my life is starting to make sense

Does anyone else get leg pain particularly with napping or sleeping? It resolves when I move around. Just wondering if it is related to POTS? 

Thank you!

Have you been tested for environmental allergies? If not, I highly recommend talking with an allergist about all this. There are a few possibilities they can explore. 

I had significant reaction to a food that we believe may actually have been a cross reaction with my environmental allergies and not a food allergy at all.

Keeping close records are important- because there are not always great tests for some of this, but recogning patterns can help guide them.

4 hours ago, StayAtHomeMom said:

 

I would write down any questions you have. If you have a portal for the specialist I would email them to him.

 

I considered that, but the list has gotten long enough that I can imagine his office would say please schedule an appointment. It’s also complex enough and specific enough to his statements and observations during the test that I suspect my PCP will answer some but may defer back to him. I am going to try to get the appointment moved up since we know the diagnosis and he is familiar with me he may need less time for a new patient appointment.

4 hours ago, StayAtHomeMom said:

Have you considered cutting down your hours at work? I know if I cut my hours I have more energy for other things. A lot of it is finding that balance. Especially considering the fatigue.

I have accommodations and we just made some more adjustments to reduce a bit of my hours. This is my second month using the new accommodations and things are a bit better but I know I don’t have a lot of extra capacity. I still work more than full time. It’s hard to know how much I can ask for. My job has been great at accommodating in many ways but we only have so many people who can do my job. 

I am definitely grateful for a diagnosis and the end of all these doubts.

1 hour ago, Pistol said:

It sounds like you have a knowledgeable doc - call his office for any question and hopefully you have a follow-up scheduled to ask questions????

Fortunately, autonomic dysfunction is his area of interest. Unfortunately, he is not currently my provider, but I do have a new patient appointment with him in March. I have a PCP appointment next week where I can ask questions, assuming she has gotten the results. Otherwise, I will have to reschedule. She is an excellent provider, but she is a generalist so I don't know how strong she will be in this area. 

Its funny because a year ago when I first saw a cardiologist, I had good reason to believe I had POTS. I considered asking for a referral to the doctor who did the test today, but I was worried that I would not be able to get in and be seen prior to an extended vacation and period of time without insurance. I wish I would have advocated for myself back then because it would have saved me a year of frustration. 

25 minutes ago, Help4Me said:

wow you did good......after I my TTT I was in a wheel chair and could not walk for a few days at all..I was shaking so badly and my whole body was vibrating for 3 days......do you know what your BP dropped to ??? what did your heart rate go up to ????   Glad you survived it.....it is a BRUTAL and unnecessary test in my opinion.....

I am not sure what my numbers were. I think she said my HR was in the low 60s when we started. I glanced at the HR recordings and the highest I saw was 114 bpm. I normally have a higher resting HR and normally am symptomatic at higher HR. I know they said the final BP out loud before they lowered me and I thought it was too low to have heard it right, but I don’t remember what it was, by that point I was really out of it and very glad he told me not to go back to work. 

Thus far, I have been fortunate to remain pretty high functioning, sort of. It’s a good thing I love the place I work and am fulfilled there and love my coworkers, because that’s where all of my energy goes. Now if I can just find some sort of rhythm for the rest of my life- because that is where I am totally non functioning. I get home from work and am pretty much leveled for the rest of the night, and weekends.

Had Tilt table today. I didn’t imagine that it would leave me feeling so awful even though he stopped the test before I passed out (but I was close to doing so). Finally getting warm from the cold saline they used afterwards. The good news is I finally have answers. I have both POTS and NCS. But I have so many more questions then I ever did before. What do allergies have to do with syncope? And I wish I knew what my vitals did based on questions asked. He talked about using the beta blocker as needed which doesn’t make sense to me, but deferred back to my primary care. I wish I asked him with more questions, but I was a little out of it after.  Fortunately he did provide me with some good resources to read on.

I had planned to return to work after the test but that was not an option. So recouperating at home.

Thanks everyone for the support!

Thanks everyone. The only med I have to stop is my beta blocker. Test is tomorrow morning and a bit more relaxed about it today than earlier in the week. It’s been a long road and I am ready to have an official answer rather than my educated guess. Ready to start feeling better.

So I am pretty sure I have P.O.T.S.. I have been for a very long while, but I haven’t wanted to self diagnose. I was started on a beta blocker a while back, which after a recent increase in symptoms we raised the dose. I have two concerns- 1) what if it’s not P.O.T.S.? And 2) what if the tilt table test is not positive - like heart rate hits an increase of close to but not an increase of 30bpm?

Classically- I have lightheaded ness with standing particularly after laying down, brain fog,  crazy fatigue and many other symtoms described. I have done a poor mans test many times. At times, between 1 to 5 minutes after my heart rate will have doubled, other times heart rate goes up 30-40 beats. Rarely it goes up by 25 or so beats. 

My tilt table test is Friday and as I get closer I become increasingly concerned that I won’t get answers, and things will be written off as psychiatric. 

Since I started having symptoms, it’s been a challenge. And diagnosis has been delayed by a period without insurance. I am sure I am not the only one who has gone through the what if’s but would be welcome to any feedback in the mean time. 

Thanks!