Where To Go Next?

[hholmes13]

So I've been on a bad stretch for the past 3 weeks that seems to be worsening. I keep thinking things are going to lessen up and then it continues to get worse. I haven't spoken to any of my doctors in well over 7 months. They had no plans to follow up with me. I'm thinking of contacting my neuro doc to see if he has any suggestions. I'm frustrated because his answer for everything before was "You need more sodium." I was taking in at least 3-5g of sodium each day and it didn't really help. It did bring my bp up to a normal level again but didn't take away symptoms. That's why I've just pushed through the last half a year even though I've still had plenty of bad days because it didn't seem to help. I'm getting close to the 1yr mark from when I first became symptomatic. I was so bad last year that I was on STD for 6 weeks and had to finally go back because we couldn't afford to have me getting paid 50% even though I didn't feel better. I'm just scared of regressing back to that point again.

He officially diagnosed me with OI/blood pooling even though my ttt had a hr increase from 55 to 120. He said that my hr increase wasn't sustained long enough to be POTS. I had the ttt just 3 days after my symptoms started. (My primary care is at Mayo in MN and I had had a similar episode the previous year so the family med doc suggested we check it out with a ttt.) At the time, tachycardia wasn't an issue for me too much. However as weeks went on, tachycardia became a huge problem. I could barely walk up a few stairs without my hr going up to 150 and I would get really short of breath. I would get tons of palpitations and chest pains. At first he said it was just because my bp was so low. However, it continued to worsen even when my bp increased to a normal level. That's when he finally gave me the beta blocker. For the most part, the meds I'm on have been making me able to get around (Midodrine & Nadolol) okay. However, now everything is getting bad again but I don't know what else to have checked out. I'm wondering if my diagnosis is correct or if it is POTS and/or something else. I just get frustrated because the neuro doc just tells me to eat more salt. He never did any sort of endocrine testing last year. They did check my cortisol to rule out Addison's but that was it. I did have a sweat test, and that was pretty normal aside from a patch of neuropathy on my right leg. I wonder if I went off my meds for a few days if a ttt would yield different results. I'm just frustrated because I'm at a place that researches autonomic dysfunction but feel like I don't know how to get diagnosed properly. He had said that he thought within 6 months I would be feeling 100% normal again. That is most definitely not the case.

I apologize for the novel of a post. I just don't know how to proceed or what to ask of my doctor. I've been avoiding going back because I got so frustrated last year. How would you handle this? Does anyone have any suggestions for things I should suggest to test for?

[sue1234]

Why not go ahead and see an endo? I did, and they did a ton of endo labs that at least looked over all my system. Some of my labs are odd, but I don't yet have the dr.'s opinion for a few more weeks. I do have a history of odd endocrine stuff, so that's why I saw one. But, I told him up front that I wanted everything checked thoroughly to see if fixing the endo side would help the POTS stuff. I'm learning patience until my next appt.!

[ramakentesh]

Trying a new medication can also give some direction. mestinon and florinef as examples might be options to talk to your Neuro about. If im going down hill I hit the ER for saline.

[L4UR3N]

He never did any sort of endocrine testing last year. They did check my cortisol to rule out Addison's but that was it. I did have a sweat test, and that was pretty normal aside from a patch of neuropathy on my right leg.

I would definitely look in to ruling out all endocrine causes, since it seems that has not been addressed yet. I also agree with Rama--trying some new meds, or even just adjusting the levels of your current meds (under your doctors supervision of course).

I definitely feel your frustration. Over 5 years of really bad symptoms and still looking for relief. Sometimes the only thing that keeps me going is the hope that there is something out there that will help-- just gotta find it. Research is being done every day .

[Lemons2lemonade]

I think that having pots is such a slippery slope for other diseases. All of the symptoms we get could be caused by a bajillion different things. On the one hand, I want to be thorough with my healthcare. On the other hand, I have to be careful not to let the panic, "what if" type feelings set in, because those are endless. It must be hard in your case. It sounds like you have all the other "fun" stuff thst comes with pots minus the heart rate. As far as your hr jumping up, everyone's does when they stand initially, but with pots it just keeps going, at least from what I have read. Honestly, I never even made the connection of "postural" until my doctor recognized it. But I knew a lot of other things were wrong and the heartrate was the least of my complaints. I don't know what type of tests your doc has run but ruling out emergent cardiac issues like ekg, echocardiogram, holter monitor/event monitor are all things that I did. Then, I went for all the weird stuff: tsh, free t3, t4, parathyroid hormone, magnesium, ast, alt, vip, tryptase, plasma catecholamines, ebv panel, urine metanephrines, ab western blot, insulin, fasting glucose, glucose tolerance test, testosterone, and estradiol. Then there's always the brain mri and eeg. These are all the things that I had done. Mayo repeated some of them. I really wished I had seen one of mayo's endos, I would have loved to hear what he/she has to say about all of this. When I went to my endo he told me I had already searched out all of the tests that he would have run.

[Schorobi]

I agree with you about seeing if you can repeat the TTT now that your tachycardia is much more prominent. It's hard to get the right treatment if you don't have the right diagnosis

[hholmes13]

Thanks for the advice! I put a call in to neurology today so now I'll just be waiting for a call to see what he thinks. I'm hoping now that this has been going on for about a year he'll quit thinking it's just a temporary problem and start looking into more ideas for causes.