Good News And Bad News

[halmad85]

Hey again everyone!

Well, I've been taking Sectral for almost a week now, and I have noticed a good change with my pulse. It hasn't gone down too low at this point, and I haven't seen it go above 115 lately. Plus, my BP hasn't dropped (usually 106/70, or right along those lines). So, I've very excited about this. The Inderal did the same for me at first, but then after about 2 weeks it stopped working. So, I'm hopeful that this won't do that.

The thing I'm confused about is that while alot of my symptoms have died down, they're not gone yet. First, I am very fatigued. Expecially in the afternoon. The symptom of brain fog is definetly still there. I still get the feeling of swelling in the back of my throat that comes and goes throughout the day, and the SOB without that swelling feeling. I'm still generally shaky and drop things while I'm at work. Still have the heaviness in my legs and dizziness at times. The heart pounding still happens, but not half as often. I still get chest pains and palpitations. My joint pain is still as bad as ever. So, what does that mean now? I thought if we could find something to bring my pulse back to normal that I would feel completely better.

I don't want to complain because I appretiate very much that something is working for me. I was starting to think I had no hope. But, I'm more along the lines of confused. Anyone else been in my shoes with their treatment?

Is it still possible that these symptoms will go away if I stay on this med longer?

[cmtaylor5]

Hi,

For me, once I started the beta blocker, there was in improvement right away, but not all my symptoms resolved immediately. I still had some heart pounding, and occasional shortness of breath. I had one "surge" about 2 or 3 weeks after I started medication. I was also still tired. Gradually, over a period of months, my symptoms all quieted down.

It has now been 9 months since I started medication and I can honestly say, I've had heart pounding (very minor, I was able to fall asleep easily with it, and it used to keep me up all night) once this month, I haven't had the shortness of breath feeling in over 6 months, I'm never dizzy anymore, and my blood pressure is stable with one or two drops over the past 3 months.

Stick with it. Last, month I tried to answer the "energy level" quiz at the forum and my response was that I was functioning at a "9" capacity. Even with summer fast approaching, this month I would rate myself as a 10 everyday. I don't know if this will last forever, but I don't feel like a "sick person" anymore.

Good Luck,

Carolyn

[halmad85]

Thanks Carolyn for sharing your experience with me. I was hoping for that kind of answer. I really like this med because I could definely see changes. I was able to deep clean my house today (with many resting periods) with minimal symptoms. Not half as bad as it would have been last week. I hope I continue to see good things like you did.

[goldicedance]

One thing we all should keep in mind is the POTS is a syndrome--that is, a complex of a variety of symptoms that seem to vary among us all. One medication may work better at controlling bp and hr but not help with the fatigue, brain fog, migraines, etc. That is probably why many of us wind up taking several meds designed to treat (hopefully) specific aspects of POTS that are bothering us. Also, sometimes, one symptom seems much worse than others at different times.

Good luck with the Sectral.

Lois

[ellen]

Carolyn, that is the most encouraging report- I hope you continue to feel like a 10, and I hope you let us know about it. We don't have any long-term studies on dysautonomia, so your kind of experience is the best source of hope for us.

[bttrflyamby1981]

When I was on the Toporal XL I only noticed a minor change in my symptoms. I was only on it for a few months though. I noticed that my heart rate was more under control and that my migraines were much better. The other symptoms stayed though, like the dizziness, faintness, weakness, sleepiness, and so on. Not having the migraines though was very helpful and made a huge difference. When I stopped taking it though I didn't start to notice a difference untill about 2 months later.

Things have just been getting worse from there....but I'll make it, I have no other choice.

I have made many changes in my life over the last few months, so I hope that helps with the symptoms. So far it seems to be, so I'll keep my fingers crossed.

Good luck to you,

Amber

[halmad85]

Thanks for the replies. Amby, I used to live in AZ too. I miss it.

I guess I'll just have to wait and see what happens with me. I have actually noticed a headache since on this med. But, I had a TIA type episode soon before and I'm having a hard time remembering if my headache (on right side) continued from then, or started after taking this med. I hate that. The headache isn't enough to make me stop though.

I also either dreamed of this...or it actually happened...I remember last night my heart was pounding in my chest and very tachy. This morning it was hard to get out of bed, but I took my med again and I'm doing fine now, for the most part.

I think I just still don't quite understand this POTS. I thought it was the stress on my body from the increased hr that caused all my other symptoms. If my hr went back to normal, I figured the other symptoms would go too. I'll just wait and see how it goes. Maybe I'll add something else in there too.

I have to try to stay away from antibiotics for sure. The Inderal was doing the same as this one for me, but then I started Keflex and it stopped working. I ***** too, because I have a rash now that will probably require abt again. I'm putting ointment on it in hopes that it will go away with that. I'm way to nervous to start abt's again. (chronic folliculitis)

Thanks for the help. You guys are fantastic as always! Happy Mother's Day!