Sudden Worsening Of Symptoms???

[FarmerAmy]

Has anybody else experienced a sudden worsening of symptoms? Here is my story...

I have always had some form of orthostatic intollerance--at lease back to my teens (I am now 40). Things like difficulty standing in one place and feeling light headed after a hot shower.

In the past 5 years or so my symptoms have slowly gotten worse. I become exhausted from sitting at my desk and doing house work is difficult. All the bending down and standing up kills me. However, I would still describe myself as pretty functional during this time. (I started taking Effexor for depression about 5 years ago and have since switched to Cymbalta. I'm not sure if this has anything to do with my slow decline, but it is a possibility. I am now switching to a different anti-depressant.)

My symptoms have suddenly become 10 times worse since the beginning of November. I've had a few things happen lately that could be the cause, but the doctors are baffled and so am I. Here's what's happened recently:

--I had a really terrible head cold in October. It was much worse than I normally have and took 3 or 4 weeks to feel better.

--I also got a stomach bug (vomiting) at the end of October.

--I started taking Norethindrone on November 4. (It's a long story. I am doing invitro fertilization and the Norethindrone was to prepare for a frozen embryo transfer. The FET is on hold now because I am feeling so crappy.) I took the Norethindrone until November 25 and should have gotten a period on Nov 28, but STILL have not gotten a period as of Dec 20. This is very unusual for me and the IVF doctor is baffled. I really thought the Norethindrone was the cause of my sudden decline, but I haven't taken it in over 3 weeks so it seems less likely to be the cause of my problems.

--I started going to a cardiologist at the beginning of November. (I was only diagnosed with OI and POTS in September--even though I've had symptoms for a very long time.) She initially just had me increase my fluids and take 2000mg of salt daily. After a recent TTT she started me on Midodrine 5mg on Dec 13. I don't think I feel any benefit from the Midodrine yet.

I have gone from feeling chronically fatigued, but functional, to needing to lie on the couch most of the day. This happened over the course of about 3 weeks. It has been about 6 weeks total since I started feeling a lot worse. (I declined for about 3 weeks and have stayed the same for an additional 3 weeks.) Some days I can get up and do things for a few hours (with some breaks), but most days I am just stuck lying down the whole day.

My question is has anybody else experienced this kind of progression? I am so puzzled as to why I took a sudden turn for the worse. Was it one of the colds I got? Did the hormone meds do something bad to me? And I am also wondering what I can expect for the future. I don't know if this is a worsening of my POTS or if I have something different going on. My cardiologist has been great, but doesn't have any answers as to why I suddenly got worse. And she tells me I'm something of a mystery (I'm sure we've all heard that a lot!)

I'd love to hear it if you have had a similar experience.

Amy

[MomtoGiuliana]

Hi Amy

Welcome to the forum although I am sorry you had to seek it out.

I think many of us can relate to your story of a baffling sudden appearance of symptoms. This syndrome typically waxes and wanes. For some people there are clear triggers (for me it was pregnancy) but for others there is no obvious "trigger".

Low dose SSRI's help some people with orthostatic intolerance but not others. Have you talked to your dr about other treatments, since you have had this decline?

Hope you feel better soon.

[ramakentesh]

Yeah I can relate - three days ago i was on the roof installing a frame for a verandah roof. Today I can barely stand.

[JWPotsMom]

Yes! My son got his first bout of POTS after a bad virus, he was disabled for 9 months.

Second bout with an antibiotic, it quit as soon as the antibiotic was stopped.

Third (currently) it started up again with a very mild cold.

[ramakentesh]

when i was younger I didnt have pots as such but I would get slightly 'out of it' every time i got a virus.

[fiona-jane]

hiya,

this is probably a stupid question but.... have you done a pregnancy test recently? you mention that you've not had your period and many people experience a worsening of symptoms during pregnancy, and i've had friends that underwent several cycles of fertility treatments unsuccessfully only to get pregnant naturally a few years later.

fi

[ramakentesh]

I wife was telling me about a woman that had severe chron's diease, got pregnant and it got worse, had her baby and went into complete and permanent remission from Chrons after that. Amazing.

[FarmerAmy]

Thanks for the replies everybody. My doctor seems baffled by my particular progression of symptoms and I just wanted to see if anybody had a similar experience. I increased my dosage of midodrine to 10 mg a few days ago and that seems to be helping--thankfully!!