fitnesskelly

I haven't seen anyone talking about taking this drug on occasion, but doc prescribed to me to take on only the days that are bad. I haven't filled the prescription yet.

@Starbust - I think you can get back to it. I'm not back to the level I was at either, but primarily because I still am unable to lift weights without suffering with tremendous coat-hanger pain after. I think part of what helped me is that I finally realized that I'm not going to die if I exercise or even push myself a little. I used to be afraid that I would end up dead if I tried to do any exercise other than maybe walking. I took baby steps to work back up to where I am now - it helped me get over the mental hump.

I get achy when it's going to rain. Also, cold, dry weather makes my neck extremely sore. Not sure if my other symptoms worsen...I will have to pay attention from now on!

Mine aren't waist high, but I have several pairs of closed toe and open toe up the calf socks made by the same manufacturer and I don't feel a difference in the amount of compression I get from either kind. I usually wear my open to ones around the house and my closed toe ones when I exercise.

I agree with this. Doc originally thought I had POTS from deconditioning because my health problems coincided with an injury from weight lifting (I was also a triathlete then). Doc told me to start doing cardio daily, so I did. I've worked my way up to a variety of activities, the hardest being mountain biking (I did 11-12 miles on the mountain bike on Saturday and a 24 mile road ride 2 days before, so I'm back into pretty good fitness). I still am just as symptomatic as before, so it's not an issue of conditioning for me.

In a way, it's nice to know that this is the reason for so many cognitive challenges. I used to think my problem was possibly due to extreme introversion, a tendency towards autism or maybe ADD - too much "noise" (like being in a group with multiple people talking at once) makes my brain shut down.

Now that you both bring that up (Katybug and bigtrouble), I do that also. I can not keep on task. And in making a decision on what to have for dinner, for instance, my mind also thinks about every little possibility and it just stifles me - it completely baffles my husband how one thing relates to another when I make a decision.

I think dentists use Lidocaine and not Novocaine these days. At any rate, I think the Lidocaine is still mixed with Epinephrine. I had a procedure just about a month ago (fix a filling) and I felt spacey the rest of the day and my BP was increase (slightly over normal for once), but I did ok with the shot I was given. I didn't ask the dentist what he used, but I would imagine he used whatever is the standard. I did feel like I would have been safer if I'd had a driver to take me back home...luckily, the dentist is right around the corner, so I did ok myself.

Same here. I really feel for you because I truly know exactly how you feel. Much of my family commented also, long before anyone (including me) knew what was going on with me.

I have the same issue with cooking. I used to be a Compensation Analyst and I'm not sure I could go back to that type of job. I struggle these days to even figure out the math on tipping. And I struggle with problem solving also. Sounds like we have many of the same cognitive problems.

I have been hit hard with the cognitive issues from dysautonomia (which is troublesome...I have a family history of Alzheimers) and I struggle to make even simple decisions, like what to eat for dinner. Just wondering if you all struggle with decisions more then you used to also.

I believe it can. I was on edge and tearful the other day (and I'm not normally like that either) and I realized it's because I've been having a flare of symptoms lately. Maybe a more knowledgeable person can help with this question since I am new to dysautonomia - isn't there some kind of "malfunction" in dysautonomia with the serotonin and dopamine receptors? That would explain the emotional struggles with flares, in my opinion.

I see doc again and will tell her. I also plan to ask for a referral to a specialist - she seems to know a lot, but her area of expertise is infectious disease. I also am thinking maybe the burning tongue is a symptom of low potassium. Not sure, but lately I'm having worse muscle pain and now my calves are cramping. Knowing that florinef can deplete potassium and my body seems to struggle to find a homeostasis with electrolytes, I think maybe I need some additional potassium (thought I needed more magnesium, but I added extra mag and found that is not the problem).

For sure OH, but no official diagnosis or testing. Going to ask the doctor that suggested I have some form of dysautonomia to be referred to a specialist, so I know for sure what form I am dealing with and get the proper treatment.

It does help raise my BP a little...and I forgot to mention that it also seems to regulate my HR (it keeps me at my normal nearly-dead bradycardia state, otherwise my HR seems to struggle to find a norm). I had the coat hanger pain before florinef, so I was really hoping that regulating BP would help that pain resolve. Another new symptom I've had lately is a burning tongue. Seems to correspond with taking the florinef. Anyone had that symptom on florinef?

Been on it about a month now. Was able to work up to the full dose (0.1) pretty quickly without problem, but the full dose almost feels like too much for me. I can't take more than 1/4 dose at bedtime or I can't sleep (and I have enough issues in that department without something else keeping me awake), so that leaves me taking 3/4 dose in the morning and I end up feeling anxious, hot/sweaty and nauseated. I cut back on my dose over the weekend to .05 split to morning and night and I still feel really hot and sweaty all the time. Thought I had a fever the other day because I couldn't stop sweating or cool down, but my temp was normal. I've also been experiencing an increase in pain again, esp. in neck and shoulders - not sure if it's the florinef or maybe something else. But now I see the BP numbers dropping again - that's the one area I really notice florinef working. Oh and it helps me with the nighttime urination problem (from not having to get up at all to being able to wait longer before I have to get up and go). I had even stopped wearing compression most of the time (I stopped because I broke my toe and the compression was making my toe hurt more). It doesn't seem that I can get the same benefit with less florinef and more salt, so the drug definitely does do something. Knowing that florinef is an aldosterone replacement, I wonder if I have an adrenal issue that caused me to need more aldosterone (no one ever tested my aldosterone). My cortisol tested fine (both serum and saliva), so it doesn't all make sense to me - Addisons is low cortisol and sometimes low aldosterone, right? So what is normal cortisol and low aldosterone?. When I look at the lists of adrenal symptoms, I have pretty much all of them and they've gradually built up over the years (sensitivity to light, sound, chemicals, severe alcohol intolerance, blood sugar issues, trouble sleeping, fatigue, some exercise intolerance, muscle and joint pain, bowel problems, GERD, etc). Anyway, those are my rambling thoughts about florinef.

I used to have an extremely high tolerance to pain...like continued to play softball on a broken ankle, didn't use any pain killers or other treatments for a torn tendon and had a neck injury from a car crash, but since my health problems came on, I'm in almost constant pain.

Do you take magnesium? My legs start cramping if I don't take plenty of magnesium. And my husband gets leg twitching if he misses a day of magnesium. I've read that the tests don't often really tell if there's a deficiency (in other words, you can test in range, but still have a deficiency).

I have one! It's a door sign, and it's not about any achievements. It says "NO SOLICITORS". It works, except for the scam artists who illegally solicit the neighborhood (these are the scary ones because I've been trapped twice in my driveway and once by a person who wedged themselves between me and my front door, each time while my husband was not home). I promptly call the police on these types - We have very strict soliciting laws.

I've looked all over the internet for this info and can't find much. I assume it's normal for someone with a normal functioning BP to be pretty consistent from sitting or laying to standing and to stay consistent over time?

Do you take Vitamin C? I was taking some higher dose Vitamin C to help my adrenals and stopped because it was theorized that I might have hemochromatosis. Within days of stopping Vitamin C, most of my joint pain cleared. More is not better when it comes to Vitamin C. Regarding the cipro, I was told if you get floxed from Cipro, you will know it because it's the most painful pain ever.

I can only find info on loss of balance with MSA. What about other forms of dysautonomia? I lose my balance often, like yesterday I was in the shower and I was leaning forward a little bit to shave my leg and when I finished I straightened my body and went to turn around. I lost my balance and almost fell back through the shower doors. I never felt dizzy. In fact, when this happens, I'm not feeling dizzy and I'm not often doing things like leaning forward or turning around...sometimes I just lose my balance. Just to thicken the plot, I can ride a bicycle fine - I suspect it's because I'm focusing on balance when I ride.

PS - Celiac is known to cause dysautonomia.

Statesof and Kellygirl - I'm thinking leaky gut. You both are describing a grain as the trigger for migraines. I'm no medical professional, but I am working on my honorary medical degree through my own health problems (ha ha) and the first thought that came to mind is leaky gut. You might google it. I know some of the ways you can help cure leaky gut are L-glutamine supplementation, being careful of what you eat or drink, gelatin (usually mixed with broth). Do either of you have a gluten intolerance or celiac? Often those sensitive to gluten are sensitive to other grains and certain foods that are known to cross-react in those with gluten issues (coffee is the main example here).

Wow! That's a ton! Has it been a long time since you've been on any of the broad spectrum antibiotics? Maybe that's why you have so much in your gut. You have me wondering if I had a different strain, since they aren't specific about the exact strain.