lattegirl

Hi do people get spikes for low blood pressure from just taking salt and some caffeine?

I  was supposed to try midodrine but was too scared because of the spikes and confused if I take tablets regularly would it make the spikes much worse

.Anyone else worked thru this ?

Many thanks 

Thanks Missy M,

I always have a coffee in the morning and that works but I can't then have another later in the day. 

Thanks interesting I will persue this

Thanks, Sorry it was no good for you.Interesting to know about the diuretic effect.

Hi

Has anyone tried using Butchers broom just when you get up or as and when needed during the day .

Wondering whether it kicks in within 30 min like midodrine and how long effects last 

Many thanks

Thanks corina,

Blood test would be one way to find out the cause .

Hi,

Does anyone know if there are differences to determine if you are suffering from random sweats and chills caused by menopause or dysautomnia?

I have NMH and have been experiencing symptoms for afew weeks now.

Many thanks

Many thanks will look into that.

That's rough for you.No hadn't thought of sleep apnea . I don't  know what my O2 levels are but had vaguey thought of buying a night mrasuring oxomiter.I generally lie down on my back first then roll to one side.

Interesting.It's the same whichever side I lay on.

Hi All,

I am struggling to work out whether there is a point at which low nocturnal blood pressure becomes unsafe. 

I have ncs .

I am a side sleeper and often wake every night with queasy stomach, feeling like I am struggling to breathe normally , quickening pulse . My bp is around 79 over 45. Whereas on my back it is 100 over 60.

Any thoughts would be very welcome.

Thanks , no specific concern just airing thoughts .

Definitely!

Do speech issues ever happen as a symptom on its own with alot of fatigue ? as I have experienced this with and without other symptoms and wondered if it is presyncope or something else??

Yes me too, reassuring to know I am not the only one !

Kaitlyn,

I get tremors in my left hand which like you get worse with stress, fatigue etc.When I have had bad episodes I my legs are trembley, my speech stutters and slurs .Are speech issues a general symptom of OI ?

Kaitlyn,

Thanks really appreciate your thoughts.

Do your tremors affect certain limbs or entire body trembling as I have experienced hand and legs.

Takecare

On ‎24‎/‎06‎/‎2016 at 2:50 AM, Kaitlyn said:

Hi Lattegirl

Florinef didn't work for me. I had headaches, nausea, insomnia, increased tremors and intense mood and irritability problems. 

With that said, I am wondering if you are using any kind of compression being on your feet that many hours? I know if I tried that I would have serious blood pooling and BP issues. That could be the cause of the fatigue. Are you having any pre-syncopal eps?

Take good care ?

Kaitlyn

Hi Kaitlyn,

Yes I wear compression socks.Ended up resigning from job with all the symptoms you described ! Now more fatigued and experiencing more palpitations, tremors, hot sweats, light headed ,foggyness.Scared myself when I felt so out of sorts I couldn't open the car door , couldn't remember how to .Also experiencing some weakness when doing things and leg cramps .Am going to contact cardiologist as I don't get what is going on .

On ‎23‎/‎06‎/‎2016 at 7:03 PM, theabrodrigue said:

My doctor encouraged me to be on potassium, magnesium, and calcium supplements with Florinef, as it depletes your levels.  I also have my potassium checked with a basic metabolic panel once a month.  It would be worth it to ask you doctor about checking those levels to see if it is adding to your symptoms.  When my potassium is low I have low energy, waves of fatigue/dropping sensations, heart rate issues, etc.  I hope you're feeling better!

Interesting thanks, my symptoms have increased especially irregular heart beats since resigning from the job .I will certainly get I touch with my cardiologist.

Yogini,

Yes I am salt and fluid loading.

Katybug - early days for me then on florinef! I make my own gi flapjack which is slow release energy and non refined sugar so doesn't cause blood sugar spikes and therefore affect blood pressure changes.

I was under the impression that florinef changes potassium level , lowering it a bit so it is good to add potassium like a banana.

Yogini,

Thanks, I haven't yet noticed much help from florinef , does it take months to know if it is beneficial? Have been taking BP and HR am and pm with no significant changes.

Katybug, really helpful information, I do find sugar levels make me rough , always reaching for a banana or gi flapjack. Can changing potassium also give you symptoms?

Katybug, interesting, kind of sounds like fatigue is something you learn to balance with dysautomnia issues and not something you can eradicate.

corina, I will check my pulse to see .Thanks.

Shan1212 I was gardening for family twice a week and had similar fatigue etc but on a less scale.

3 hours ago, statesof said:

I have not personally been on florinef so I cannot comment on the idea of side effects, but did you notice if the being on your feet for 5 hours at a time had any affect on your symptoms? I only mention this because I know if I am on my feet for too long I typically will start to feel worse over time.

Interesting, yes I was becoming gradually more symptomatic and sometimes suddenly worse as time went on

Thanks

Been on florinef for 3 weeks, started new job, 20 hours , 5 hour shifts on my feet after 2 weeks I had to quit.So fatigued couldn't function at home and struggling with nausea, high feelings , poor concentration , headaches, feeling faint. I am sensitive to drugs in general, does this sound like florinef is not agreeing with me or something else like exercise intolerance ??

Any thoughts would be appreciated, thanks .