time for an update since I started Clonidine...

[karinosa]

Hello everyone!  I know I haven't posted in a while but now I can tell you more of what has been happening.

As some of you may recall I finally found a specialist that would treat me, this being a kidney specialist together with my family doctor.  I was started on a very low dosage of Clonidine 0.025mg once a day and slowly I have now increased it to 0.075mg 4 times a day.

My blood pressure has finally been in the normal ranges with movemente 125/78 +/-  I still get the drops when laying down sometimes to 90/50 which makes me feel very weak, but I'm glad that I'm no longer going to 165/104 like it was before.

I have also been started on Celexa, first 10mg a day for a few weeks and now I'm at 20mg daily, I take it now at night as it does make me very drowsy, this has helped in my sleeping patterns, before I would wake up every 2 hours or so, now I only wake up once a night or sometimes I have been able to sleep thru the night, a very welcomed change!   The Celexa is what has helped my heart rate more that just the clonidine alone, at rest it is at 67 or so and before it would be in the high 90's.   When doing stairs it does raise to 110 which still makes me very tired and sometimes I experience chest pains but prior to all these meds doing stairs would raise my BP and heart rate to 140 and I would feel extremelly sick, now my BP does raise but still within normal ranges.

My anemia is back, my ferritin is at 6, back on 300mg 3X daily of iron pills, which make havok to my stomach.  It has been determined that the cause is my very heavy periods (sorry if I'm offending some by being so open)  I had told that to my doctor before but I guess I'm finally taken seriously.   I'm beeing sent for an ultrasound - no date yet, and have an appointment to see a Gyne on May 13th, what the doctor is suggesting I have done is a endometrial ablation, which should stop my periods for up to 5 years, so I'm told, kind of scared of having this done but if this helps with my reocurring anemia I would be very glad.   I'm sooo tired all the time and very sleepy so hopefully getting this under control it would help everything else.

I have to go see my doctor on Monday as yesterday and today my legs have been quite swollen as well as my hands, also my little finger on my left hand is gone numb, not sure if I'll need a diuretic or if something else is now beeing affected.

I'm only 41 and sometimes I feel like I'm in an 80 year old body!  I still get quite cold, not sure how I'll cope this year with the summer weather coming as humidity and heat are not easily tolerated.

Weight is still the same - heavy! but since I started the clonidine I have noticed that the fat around my middle has been vanishing but my weight remains the same, not sure how that is happening but glad that it is happening!

My energy levels are still low, I'm assuming due to the anemia, but my head feels much more clear, haven't had headaches in weeks, nock on wood, dizzyness has diminished but I'm also more aware of changing position gradually.

So here I am still dealing with all these but hopeful that I'm heading in the right direction.

Hope that everyone else has a great Easter week ahead filled with many blessings.

Karin

[laurab2818]

Thanks for the detailed update.  I'm glad you are getting better.  That's great. I hope that continues for you!  And that the

I've been meaning to send in an update too on Clonidine, etc.  Since starting the Clonidine, my pulse has gone down to being in the 70's or 80's, which is great for me.  I cannot take a higher dose b/c of low BP.  My pulse still goes way up when I climb my stairs or other mild exertion.  I tried adding Midodrine recently and my BP did not improve or my HR.  Also had bad anxiety, insomnia, and headaches much worse when on Midodrine.  So now I am trying adding Fludrocortisone, just started today.  Hoping this will help in combo with Clonidine.  

Interesting about the Celexa helping your HR. I am on Cymbalta and have not noticed improvement in POTS but it does help me with pain and mood stuff.  I wonder if Celexa is more effective with POTS than Cymbalta?  Anyone know?

My energy is still low and I had hoped it would get better since my HR is down. I'm interested in anyone's thoughts on this.

:)
Laura

[evo123]

Hiya,

It is so good to hear you are finally going in the right direction x and I am glad the meds are helping xx  

I would be careful about taking a diuretic with POTS, I have heard these can make symptoms worse, although I am not certain - others here might have more knowledge on this.  

I agree with your decision to stop your periods.  Maybe this will stabilise you a bit and ease symptoms, I have low ferritin to and am always way more symptomatic around this time, most times I am not at all functional :( x

Happy Easter x