LymeNet Home LymeNet Home Page LymeNet Flash Discussion LymeNet Support Group Database LymeNet Literature Library LymeNet Legal Resources LymeNet Medical & Scientific Abstract Database LymeNet Newsletter Home Page LymeNet Recommended Books LymeNet Tick Pictures Search The LymeNet Site LymeNet Links LymeNet Frequently Asked Questions About The Lyme Disease Network LymeNet Menu

LymeNet on Facebook

LymeNet on Twitter




The Lyme Disease Network receives a commission from Amazon.com for each purchase originating from this site.

When purchasing from Amazon.com, please
click here first.

Thank you.

LymeNet Flash Discussion
Dedicated to the Bachmann Family

LymeNet needs your help:
LymeNet 2020 fund drive


The Lyme Disease Network is a non-profit organization funded by individual donations.

LymeNet Flash Post New Topic  New Poll  Post A Reply
my profile | directory login | register | search | faq | forum home

  next oldest topic   next newest topic
» LymeNet Flash » Questions and Discussion » Medical Questions » Guess who starts florinef tomorrow...?

 - UBBFriend: Email this page to someone!    
Author Topic: Guess who starts florinef tomorrow...?
canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785

Icon 1 posted      Profile for canbravelyme     Send New Private Message       Edit/Delete Post   Reply With Quote 
Hi guys,

Saw my LLMD today; when I told him I wouldnt be able to get a tilt table test for a year, he took my BP and heartrate sitting, then stading at 3, 6 and 9 min. By 9 min, my heartrate was 120bpm! It's no wonder I can't do anything!

--------------------
For medical advice related to Lyme disease, please see an ILADS physician.

Posts: 1494 | From Getting there... | Registered: Aug 2006  |  IP: Logged | Report this post to a Moderator
lax mom
Frequent Contributor (1K+ posts)
Member # 38743

Icon 1 posted      Profile for lax mom         Edit/Delete Post   Reply With Quote 
Thank goodness he's not making you wait a year to get some relief!

POTS is MISERABLE...as if all of the other collateral damage from Lyme wasn't enough.

--------------------
♥ ♥ ♥ ♥ ♥
(aperture)
http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=115161;p=0

Posts: 2519 | From USA | Registered: Aug 2012  |  IP: Logged | Report this post to a Moderator
GretaM
Frequent Contributor (1K+ posts)
Member # 40917

Icon 1 posted      Profile for GretaM     Send New Private Message       Edit/Delete Post   Reply With Quote 
I quite often think this about my LL and all the LLs...it's a wonder they all don't need custom tailored shirts sized 60 inches across the chest-to fit those BIG HEARTS of theirs!

And how do they hide their halos during their everyday life?

If ever there were angels among us it's LLs.

I'm very serious.

Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013  |  IP: Logged | Report this post to a Moderator
canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785

Icon 1 posted      Profile for canbravelyme     Send New Private Message       Edit/Delete Post   Reply With Quote 
Um, guys, how come I feel better already?

I took a florinef at around 12:30...by 2:30, I noticed a sense of some physical relief.

LAX, I've been thinking of you every time I see that walkway over the Hudson, and also with hyperadrenergic POTS -- are you on Florinef?

--------------------
For medical advice related to Lyme disease, please see an ILADS physician.

Posts: 1494 | From Getting there... | Registered: Aug 2006  |  IP: Logged | Report this post to a Moderator
lax mom
Frequent Contributor (1K+ posts)
Member # 38743

Icon 1 posted      Profile for lax mom         Edit/Delete Post   Reply With Quote 
Your body must have need the extra fluid volume.

I was supposed to try it again but my Urologist said it was iffy because I recently had a kidney stone.

Awww yes, the walkway that some day we will be healthy enough to walk across! Then we'll know we experienced a miracle!
(It's gonna happen)

[Smile]

--------------------
♥ ♥ ♥ ♥ ♥
(aperture)
http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=115161;p=0

Posts: 2519 | From USA | Registered: Aug 2012  |  IP: Logged | Report this post to a Moderator
canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785

Icon 1 posted      Profile for canbravelyme     Send New Private Message       Edit/Delete Post   Reply With Quote 
<you made me teary [Smile] >

Yes, when we're well enough, we have a date! In fact, maybe we should make it a group date...in groups of ten? [Smile]

Florinef is also used for adrenal insufficiency...I bet I have that going on as well.

LLMD said he suspects there are a number of problems going on -- which is what I've suspected for a while. He also said he thinks we're narrowing in -- I think so as well [Smile]

[kiss]

--------------------
For medical advice related to Lyme disease, please see an ILADS physician.

Posts: 1494 | From Getting there... | Registered: Aug 2006  |  IP: Logged | Report this post to a Moderator
canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785

Icon 1 posted      Profile for canbravelyme     Send New Private Message       Edit/Delete Post   Reply With Quote 
LAX -- I forgot to ask -- how are you treating the hyper pots?

--------------------
For medical advice related to Lyme disease, please see an ILADS physician.

Posts: 1494 | From Getting there... | Registered: Aug 2006  |  IP: Logged | Report this post to a Moderator
lax mom
Frequent Contributor (1K+ posts)
Member # 38743

Icon 1 posted      Profile for lax mom         Edit/Delete Post   Reply With Quote 
I'm still on a beta blocker (Toprol Xl).
I'm supposed to take Midodrine but cannot get over the fear of it.

One thing that has been a huge help was physical therapy in a pool (like they do with the elderly).

I was able to move in the water easily because the water acted like a full body compression stocking [Wink]

That enabled me to get a little stronger which has meant I no longer need a shower chair! (small victory, but I'll take it!)

--------------------
♥ ♥ ♥ ♥ ♥
(aperture)
http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=115161;p=0

Posts: 2519 | From USA | Registered: Aug 2012  |  IP: Logged | Report this post to a Moderator
canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785

Icon 1 posted      Profile for canbravelyme     Send New Private Message       Edit/Delete Post   Reply With Quote 
Geez...we're such a mess!

He also prescribed Toprol XL, but I'm nervous about taking a beta blocker -- told me to see how things go on the Florinef for two weeks, and if my heartrate has not significantly improved, take the Toprol.

Do you have any concerns with the Toprol?

--------------------
For medical advice related to Lyme disease, please see an ILADS physician.

Posts: 1494 | From Getting there... | Registered: Aug 2006  |  IP: Logged | Report this post to a Moderator
lax mom
Frequent Contributor (1K+ posts)
Member # 38743

Icon 1 posted      Profile for lax mom         Edit/Delete Post   Reply With Quote 
That's so funny! We all have our fears of meds and Drs on LN! Of course we do...we've been burned so many times before. [dizzy]

Oh no concerns with the Toprol XL. It has done nothing but help me.

It took a while to get my dosage correct. Now I'm on the right dose and am glad it's on board.

--------------------
♥ ♥ ♥ ♥ ♥
(aperture)
http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=115161;p=0

Posts: 2519 | From USA | Registered: Aug 2012  |  IP: Logged | Report this post to a Moderator
coffee71
LymeNet Contributor
Member # 17467

Icon 1 posted      Profile for coffee71     Send New Private Message       Edit/Delete Post   Reply With Quote 
POTS treatment was a turning point for me.

It was hard at the beginning of treatment because it took some time to adjust the doses of metoprolol and midodrine.

And drinking plenty of water is important for me.

Exercise-still have not got used to do it on regular basis.

Posts: 191 | From va | Registered: Sep 2008  |  IP: Logged | Report this post to a Moderator
lax mom
Frequent Contributor (1K+ posts)
Member # 38743

Icon 1 posted      Profile for lax mom         Edit/Delete Post   Reply With Quote 
coffee: how did you feel when starting the midodrine? I'm terrified of it...but need to start it.

--------------------
♥ ♥ ♥ ♥ ♥
(aperture)
http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=115161;p=0

Posts: 2519 | From USA | Registered: Aug 2012  |  IP: Logged | Report this post to a Moderator
coffee71
LymeNet Contributor
Member # 17467

Icon 1 posted      Profile for coffee71     Send New Private Message       Edit/Delete Post   Reply With Quote 
If I remember correctly I started 5 milligram every 3 hours and had to take it first thing in the morning with metoprolol xl.

I had something like "tingling in the brain" and some very bad headaches.
My naïve explanations of headaches was "that blood was finally circulating trough my brain properly". Headaches stopped after few months.

Midodrine may cause a significant increase in blood pressure when lying down- this happened few times at the start of the treatment but as time passed by it did not happened again. Had to take half of metoprolol tablet in the evening.

Skin was extremely dry and I was very thirsty but I saw improvements in my neurological symptoms and the heart rate tests had improved so I learn to deal with side effects.

I also tried to go off midodrine on my own without consult with doctor but symptoms would return within several days- palpitations, dizziness, fainting feeling etc.

And drinking a lot of water helps me, but my problem is when I go through longer periods of "feeling healthy" I slack on "good habits".

Posts: 191 | From va | Registered: Sep 2008  |  IP: Logged | Report this post to a Moderator
   

Quick Reply
Message:

HTML is not enabled.
UBB Code is enabled.

Instant Graemlins
   


Post New Topic  New Poll  Post A Reply Close Topic   Feature Topic   Move Topic   Delete Topic next oldest topic   next newest topic
 - Printer-friendly view of this topic
Hop To:


Contact Us | LymeNet home page | Privacy Statement

Powered by UBB.classic™ 6.7.3


The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:

The Lyme Disease Network of New Jersey
907 Pebble Creek Court, Pennington, NJ 08534 USA


| Flash Discussion | Support Groups | On-Line Library
Legal Resources | Medical Abstracts | Newsletter | Books
Pictures | Site Search | Links | Help/Questions
About LymeNet | Contact Us

© 1993-2020 The Lyme Disease Network of New Jersey, Inc.
All Rights Reserved.
Use of the LymeNet Site is subject to Terms and Conditions.