Are your symptoms much worse with cold or flu?

[NYCpots]

Hi there,

I'm wondering if any of you find that when you have a cold or sinus infection that your POTS symptoms (specifically heart rate surges when standing) become much worse and, if so, why is ? I am not dehydrated, have and am on all my usual medications, salt load etc. If this happens to you - do you do anything different(ly)  (e.g. take more meds? etc.) or just muddle through? I'd love any feedback. Thank you so much!  (P.s. my cardiologist - who is also not a POTs expert) is out of town and my primary care doctor knows zilcho about POTS :(

[NYCpots]

Heiferly - Thx soooo much for your note.  i see the dr. who runs the autonomic lab at Columbia University in NYC (dr. louis weimer)  and, to be honest, he's pretty useless. He really just wants to 'test' (and in not a very sophisticated way) - and he doesn't believe in IV fluids unless in DIRE emergency (basically you have to be dead). I am seeing him on Monday but I'm not hopeful. It's pretty clear he'd rather not see ANY patients for treatment but I think he has to......:( The cardiologist i see is with Cornell Medical which does not have an autonomic lab but he is actually a lot more interested in  'treating' and experimenting but, again, he does not believe in IV fluids unless near death. I'm so frustrated! I just don't know what to do and i'm so tired of fighting for treatment. One question -  a doctor i saw last week in a work-up for carcinoid  suggested he may want to try me on Ocreotide (sandostatin) for my flushing. I have read that some doctors have been trying this for POTS. Have you ever tried this or heard about it? I'm not sure if this would be a trial instead of or in addition to midodrine......I'm going to write a quick post to see if anyone has tried Ocreotide......I really think i need to move near a doctor for 6 months who can experiment and give me IV fluids so i can get back on top of this - it's getting to be too much and I'm just ready to give up and play in traffic.

[NYCpots]

Thank you so much for your fabulous advice.

Heiferly - i see the dr. who runs the autonomic lab at Columbia and, to be honest, he's pretty useless. He really just wants to 'test' (and in not a very sophisticated way) - and he doesn't believe in IV fluids unless in DIRE emergency (basically you have to be dead). I am seeing him on Monday but I'm not hopeful. :( The cardiologist i see is with Cornell Medical which does not have an autonomic lab but he is actually a lot more interested in  'treating' and experimenting but, again, he does not believe in IV fluids unless near death. I'm so frustrated! I just don't know what to do and i'm so tired of fighting for treatment. One question -  a doctor i saw last week in a work-up for carcinoid  suggested he may want to try me on Ocreotide (sandostatin) for my flushing. I have read that some doctors have been trying this for POTS. Have you ever tried this or heard about it? I'm not sure if this would be a trial instead of or in addition to midodrine......I'm going to write a quick post to see if anyone has tried Ocreotide......I really think i need to move near a doctor for 6 months who can experiment and give me IV fluids so i can get back on top of this - it's getting to be too much and I'm just ready to give up and play in traffic.

Enzymelover - thanks so much for your note re: cortisol. I have been on a short 'pulse' dose of prednisone for the sinus problems so i'm hoping that covers me for add'l steroids. I have also increased my fludrocortisone a bit yesterday but i'm not sure how long that takes to 'kick-in.' I'm just so tired of it all.......

[enzymelover]

If you have any cortisol deficiency, it is imperative that you increase your dose of cortisone with infections and fever. We all need a dynamic cortisol response during illnesses to help control inflammation and other immune reactions, and the physical stress on the body. With more serious illnesses, you're in big trouble if you are cortisol deficient. However, if you are taking Florinef already, your doctor will have already discussed with you the need to raise your dose, or not, with infections. Or at least he should have.  :)

[Heiferly]

Although you say you're not dehydrated, your body likely needs more fluids when it is under the stress of illness than it would normally.  So if you are only taking in your "normal" fluid- and salt-loading regimen, you probably need to step it up a bit when you are ill.  I often end up more hypovolemic when I get a virus or bacterial infection and have to go to the hospital to get IV fluids to help "tank up."  Some people find that they are able to compensate sufficiently with their oral intake; it's different for each of us.  

If you're drinking like a fish and salting like mad and you're still having a serious drop in BP secondary to your infection, you may want to ask your doc about IVs to help you get through it.  For me, the sign has been that when my lying down BP gets to what my standing BP usually is (meaning that it will drop even further and be pretty much guaranteed syncope if I try to get out of bed), then it's time to get some IV help.  This is a good thing to discuss with your doctor and make plans for in advance so that you have a plan in place for whenever you get sick so you're both in agreement on what you will do.  (Some docs may want to see you in the office first, others want you to head directly to emergency ... whatever the plan is, it's a good idea to have one!)

Does your cardiologist have another cardiologist covering the practice whilst out of town?  There should be someone else that you can contact in the meantime I would think.  I've had to see an alternate cardiologist when mine was out of town before ... not ideal, but in a pinch it's better than nothing.  What hospital system do you go through?  Is it either of the ones in NY that have autonomic departments?  I would think either of them could handle you through the emergency department if you think you might need IV fluids.

[beema36]

I am sorry ur sick. Bluewinds right. Being sick.stressed,etc makes symptoms worse as does a fever. It makes sense as when ur sick it has to affect your autonomic system so stands to.reason u would feel.worse.
Listen to your body and.rest, drink plenty of.chicken soup or broth like
our gmas told us.:) Seriously that way u get fluids and sodium that your body needs and its easy on stomach. Of.course thingsike.gatorade works too. Bottom line ur sick. Your body needs TLC and don't take extra Meds unless Dr tells u.
Feel better soon:)
Beema

[bluewind95]

Any stress does that to me. Physical, mental, anything, really. I wouldn't take more meds, though. Changing the dose without asking your doctor is a really, really bad idea. I'd say to drink even more water and take more salt if yor bp is low. If it's not, then, well, the heart rate surge I don't think there's much you can do about it. If you have a fever, a fever will cause a heart rate increase on its own, so I imagine it's worse for us. Just give your body rest, I guess, and wait it out?

I'm not sure why it happens that illness can worsen POTS. But if I recall correctly, stress worsens it, and illness is a physical stressor. So I guess it's "normal"?