I'm Terrified To Say This

[Notgivinup]

But, I think I'm feeling much better, again almost normal. It's been quite a few days now. I don't know what to attribute it to. I'm still on singulair, zantac, tumeric, & 90mg. cymbalta.

I increased my cymbalta by 30mg. Maybe that's it? I still don't know if I have MCAD. Like I mentioned before, I haven't been tested for it. I'd like to go off the antihistamines to see if that's what's doing it, but after being sick for 3 years, I don't want to waste even one day. I'm scared to put myself back in a POTS hole.

But if I don't I'll never know. When would be a good time to make myself feel like crap? LOL.

[Tachy Phlegming]

Never.

Some things should not be tested. I think you've just found one.

You'll probably get a sense of what is really helping as time goes on (like you'll wait a few extra hours before doing something or will forget to take something and it will or won't matter).

In the interim, enjoy it.

[erik]

There was someone on another forum that said higher dose cymbalta (and augmented with abilify) added to fludro/midodrine brought her kid back from barely functional to totally normal (night & day change). I think sometimes people do find med combos that make a huge difference for them. I know I feel somewhat better on Claritin or Zyrtec, but I do normally take the "D" version so I get some "pressor" effect by norepinephrine boost via the pseudoeffedrine (my "poor man's midodrine" I've wondered how much the anti-histamine might be helping me too. I've tried the non-"D" versions a little, but not enough to tell yet.

[ana_22]

YAY!!!!!! SO VERY happy for you!

Please keep us informed as to how you are going! xx

[Elenapap11]

Now this is indeed good news.I hope that you're one of these people who have woken up and miraculously everything is gone.Make sure to keep yourself in a good mood and avoid stress at any cost.I know from personal experience that stress can get you back to zero.Have a wondeful day!

[ana_22]

hey i just had a thought....how long have you been taking cymbalta? i know it can take up to 12 weeks to get the full effect from antideps.

also just out of curiosity what were your symptoms? did you have gi symptoms? and were you mostly homebound?

thanks

[janiedelite]

That's awesome!!! Keep trying to gradually push yourself and see what your body allows you to do on your new regimen. Obviously, you're doing something right! Enjoy it!

[Maisie87]

Congrats!! Your dedication to getting healthy is paying off- whether your good spells come and go or remain- like the others say, you are obviously doing something right.

I understand being paranoid about "re-POTSing" yourself. ..but just take it very slow and enjoy it. Listen to your body- I'm sure you will get a feeling when it's time to rest and take a step back. One of the many lessons in POTS is patience. so happy you are getting some relief. keep us updated

[Notgivinup]

Thanks everyone. Like I said I feel a little guilty feeling better, when I know some haven't felt good for ages. Although I've definitely put in my time! LOL

Ana_22, I had been on cymbalta for a good 7-8 months or more. But only 60mg. I've been on 90mg. now for about 10 days.

My symptoms were many, general flu like feelings. ALWAYS lightheaded,dizzy, nauseous, tired, legs felt like a thousand lbs. each. Cognitive dysfunction, bad, very forgetful, couldn't comprehend simple things. Heart rate was always high though not super high. ( 125 standing). Anxious, irritable. B/P low, then went to high, then all over the place. I stopped checking. Some palps, but not many. A little chest pain at times.

Did not want to get out of bed at all, and in fact could/would not many many days. I did manage to force myself to do the bare necessities. Feeling like death warmed over the whole time. On a couple of my worst days I got very angry, and forced myself to jog around the house. It was hard but I always felt a tiny bit better. I was never a fainter, so I didn't have that worry.

IDK, muscle pains are the only thing that still plague me, oh, and still not as much energy as as I use to have. I tire out quickly.

So that's about it I think.

[kayjay]

I AM SO HAPPY FOR YOU.... YES I AM YELLING!!!

don't push yourself too hard and never get dehydrated. Enjoy your good days. May you have many many healthy days!

I think you are going to get completely better ... so many people do... they just disappear from the forum. Don't take this the wrong way... but I hope someday I never read another one of your posts because you forgot you ever had POTS!

( if not we will still be here for you )

[erik]

Do you know if the physically measured signs have stabilized... or is it mostly the symptoms? In other words, is your BP now more stable... and heart rate more stable perhaps, even standing up? I am curious because I have had some good runs myself (times of symptom relief), but I've always still had the trademark POTS HR increase (well, except for 2 separate days when I hadn't... when my BP was very high).

Since you're feeling relatively well, I don't feel as guilty asking Could you do a "poor man's tilt" test some time soon to see if the underlying stuff is stable or if it's still there but symptoms are being helped??? Sorry to press... maybe I can "guilt" you in to doing it... you know, for all us sick folk out here, oh well one!

And congrats, BTW. Definitely never a need to feel guilty for an improvement... good news is always welcome!

[Notgivinup]

Do you know if the physically measured signs have stabilized... or is it mostly the symptoms? In other words, is your BP now more stable... and heart rate more stable perhaps, even standing up? I am curious because I have had some good runs myself (times of symptom relief), but I've always still had the trademark POTS HR increase (well, except for 2 separate days when I hadn't... when my BP was very high).

Since you're feeling relatively well, I don't feel as guilty asking Could you do a "poor man's tilt" test some time soon to see if the underlying stuff is stable or if it's still there but symptoms are being helped??? Sorry to press... maybe I can "guilt" you in to doing it... you know, for all us sick folk out here, oh well one!

And congrats, BTW. Definitely never a need to feel guilty for an improvement... good news is always welcome!

Erik, I will. Maybe even tomorrow. I haven't checked anything. I'm not sure why. I just put away my B/P cuff & said forget it. I guess I was "afraid" if things were way off, I'd stress myself into feeling sick. But I have been curious. Tomorrow I'll do it!

[avidita]

That is so AWESOME! I hope you stay well. Your story has given me hope in a very difficult time for me I thank you for that!!!!!!

[Notgivinup]

That is so AWESOME! I hope you stay well. Your story has given me hope in a very difficult time for me I thank you for that!!!!!!

Aww, I'm soooo glad I could do that for you. I had almost given up hope a few times. But I never stopped trying new things.

One more thing I forgot to mention. I don't know if I believe this had/has anything to do with my recovery/remission, BUT, I'm going to tell you anyway.

About 4 weeks ago, every night before I went to sleep I would visualize myself healthy. I would actually make myself see it. See myself running, playing with my son etc. Then I would, and still do, say to myself...."Everyday, in every way, I'm getting better & better."

Sounds corny I know, but it made me smile to see myself feeling good. And it was better than focusing on the negative, which I had done for so long. I'm not suggesting this cured me by any means. But it didn't hurt to do. Hey athletes do it!

[ramakentesh]

If your medication seems to have yielded benefits dont rock the boat. Stay on it until you stabilize.

Positive thought is nice and all but sometimes improvements can be spontaneous - I know of a person that woke up WITHOUT POTS - just gone. One day sick, the next completely symptom and presentation free. So its definately possible.

For me, I push through, I exercise hard - im talking running and i ignore as much as I can and eventually I seem to improve. its not always easy. Im lucky in that so far at least Ive only had boutes of serious symptoms and between times Im okish although after this last boute the residual symptoms are hanging around a bit more.

And Erik - yeah even when im feeling well, if you test me I still have POTS 100% - orthostatic hypertension and tachycardia every time. On holiday I can feel 100% well and still have these testable results .

[Lenna]

Don't discount the visualization!!! I wish I could get my son to do it. I visualize for him...but it's not quite the same.

[mountain girl]

I am sooooo very happy for you. Yes, you did put your time in being sick with this for three years. I did recently read that many people improve after several years, so you are one of the lucky ones. Don't feel guilty sharing your good news, it is good to know that just maybe some of us others will be able to improve as well, with time.

[Mrs. Burschman]

Yay!

Don't mess with the meds. Just enjoy it for a while! It will sort itself out eventually, and you'll figure out what works. But for now, have fun!

Amy

[Notgivinup]

Thanks everyone!

Erik, I did take my B/P & HR today. I didn't do the whole sitting, standing, lying. I just checked standing, once. I'll do the whole thing tomorrow.

Anyway my B/P was pretty high 135/101. HR 105. But I felt fine. I took my 5 year old to a Bounce Around play date tonight, & when I got home I took it. Not sure if all the activity raised my B/P or not. I'll try again tomorrow when I'm calmer.

I do have a tiny bit of chest pain right now, but nothing scary.

[Notgivinup]

Hi everyone! Just wanted to give a real quick update. (I should be sleeping).

Been feeling so so. Some good days some not so good. So very hard to explain my symptoms as they are so vague now.

Fatigue has still been an issue for me. I'm still on the same antihistamines I described above.

When at home I'm feeling pretty good I guess. Went X-mas shopping yesterday, only lasted an hour & a half. My legs started getting real heavy, & the brain fog & lightheadedness descended upon me.

I do have some kind of infection going on. Went to ER a few nights ago. Thought I had a UTI. Negative for bacteria. But I had all the usual symptoms. Doc did a pelvic exam and took some tissue (like a pap). He said I have a pelvic infection! ***? Never had one of those before. He gave me a horrible antibiotic called flagyl. I.could.not.take.it. After 2 days I took myself off it. I still feel the bladder pressure, urgency etc. But I felt worse on the medicine.

Soooo here I am, needing to go see another doc. for whatever I have. Procrastinating. Don't want to see another doc!!!! Ugggg. I know you all can relate.

Brain fog is still with me. I can usually do ok, IF I'm alone in a nice quiet atmosphere. Once my 5 year old starts talking, I just lose all train of thought. Blank. Cannot concentrate or focus for the life of me.

Well, I guess that's about it. I have not checked my b/p or h/r for over a month I think. Just doesn't matter. What matters is how I feel. Sorry this ended up being so long. I see Dr. Grubbs in Feb. I'll keep you guys updated.

[toddm1960]

In the 22 years I have this I've had two major remissions lasting a year or longer. I've never been able to pin the remission or the relaps on any one thing ( I've tried for years ) Enjoy every minute of feeling well, and don't look back.