JaneEyre9

prayed for you today...

Kristen

Hi all,

I was reading a post here yesterday and clicked on a link that ellen posted for Florinef side effects. Among other things, it said that Florinef can cause:

"Abdominal pain"

"back or rib pain"

"nausea or vomiting"

"loss of appetite"

"pains in stomach or side, possibly radiating to the back"

"unexplained weightloss"

My RUQ pain, nausea, and weightloss all improved when my Florinef dose was reduced for other reasons. I always thought it was a coincidence till i read this list of side effects. It seems it might be related...just wanted to call attention to it for anyone who suffered like i did.

Kristen

http://www.drugs.com/cons/Florinef_Systemic.html

I've had a diagnosis for about 1.5 years. (I've had autonomic symptoms off and on for about 8 years but was able to function pretty well up until my diagnosis.)

I feel the same way. I classify the feeling you described as "fatigue"-- especially when i have the muscle aches along with it. When i feel like i'm going to fall asleep, i call that "sleepy" just to clarify to friends and family that there is a big difference. I am also young and share the worries about making a living in the future. I had to stop working because of these symptoms. You described it well by saying a 2hr day "out" is the same as a 10hr day for a normal person. I feel the exact same way. Sometimes i even feel that way without leaving the house!

Kristen

My reaction to CT contrast was immediate and severe. In addition to significant HR and BP fluctuations, I also had itchiness in the back of the throat, in my mouth, a swollen lip, and trouble breathing. (This was even with them pushing IV fluids and IV benadryl.) I was very close to losing consciousness which they tried to say was me being "sleepy." grr. I think there is a big difference between fainting and sleepy.

I had to go to the ER right away and had a tight feeling in my throat for at least a week afterward which made it difficult to breathe/get comfortable.

That is definitely something you don't want to mess around with. Better to get medical attention rather than let it go.

Awww! I was very glad to read this post! I know that it doesn't mean "all is fine." But I'm glad that at least you can rest up in your own bed and not have people pulling things out of you in the middle of the night!!!

Thinking of you as always,

Kristen

Hi Dayna,

I've often wondered the same thing as I am very drug-sensitive. I actually felt better when some of my medication dosages were reduced! I still need the meds though...it's a very delicate balance. I think it is a personal balance that each person has to find for themselves, but I sympathize with your frustration. I know that reducing stress, getting a lot of rest, and doing rehab exercises (when I'm able) have all helped me. I'm sure that time has been a healer as well, but to what extent, i do not know.

Kristen

Hey Steph-- That's great news! I'm so happy to read that you can get your injections again.

Kristen

That's such a neat story. It's really refreshing when people of any age ask questions rather than staring. Leave it to little kids to do the difficult ice-breaking.

Hey Melissa! What a wonderful surprise to see your post here! Sorry to hear about the BP and nausea issues. I'm glad you are getting fun visitors like the gastro and your dad!

Hang in there, hon. Like a lot of other people here have said, you have an amazing attitude. You really uplifted me with the card you sent. With all you are going through, it means even more to me.

Kristen

Welcome to the forum, dizzy! Your symptoms sound a lot like what I experienced when i was first diagnosed with POTS (though i had a viral onset, not from giving birth). I too had symptoms off and on for at least a couple years before i fainted and became dizzy and tired all the time. I couldn't function to drive or go to work after that. I would experience symptoms sitting and standing and I was always worse around my period. (At my worst i would also experience symptoms lying down.)

As for how much salt you need, a doctor usually determines that. What i try to do is liberally salt my food and go out of my way to get salt into all my meals (like eating pretzels, having soup, and drinking electrolyte replacement drinks). Also drinking water all day helps a lot. I carry a bottle of water with me everywhere (and if i don't, i end up very sorry)

How "bad" your case of POTS is usually is determined by your heart rate and blood pressure changes upon standing as well as how much your symptoms affect your life. If you cannot do your normal daily activities because of POTS, then it is having a major impact on your life. You can take your heart rate while lying down, and then while standing to see how much of a difference there is. Have you had a tilt table test? That is the common diagnostic test for POTS.

I think after reading many posts here, you'll find people with symptoms and onset just like yours. You can also explore the main DINET page for symptoms, treatments, and other helpful info.

http://www.potsplace.com/

Welcome!

Kristen

Here is your special, patented, early-morning shout-out: "YAY!"

I bet you look like Sophia's dancing red dot right now...

Don't go trying to have any more weird, record-setting reactions!!! I mean it!

Hi Suzanne,

Here is my understanding of it:

Florinef works to retain the salt that you eat, and the salt, in turn, works to retain the water you drink. So I think the goal is to get the extra salt to keep all that water in your vessels rather than passing out of your body.

I also wake up thirsty during the night and keep a big glass of water on the nightstand. It helps me fall back to sleep if i can take a few gulps.

You might want to check with your doctor to see if you need so many salt tablets...especially if you are drinking gatorade and eating more salt in your diet. I actually rely completely on getting sodium from my diet and don't take any tablets. I find that works for me. You might not feel quite as thirsty if you don't take as much salt, but that is up to your doc.

Kristen

Jan,

Thanks for posting this update. I think about you guys often and pray for you. Glad to hear your are resting and taking care of yourself. Also glad the spheres had some good effects. I hope that the upcoming treatments are even more effective for Jeff. This must be so difficult for both of you-- I can't even imagine.

Kristen

Hey Jacquie,

It sounds like you were paying the price for your good time. It might have had very little to do with the sips of beer and be more from the stimulation and sitting upright. That happens to me...trying to go out always catches up with me one way or another. Hope you can get some rest and feel better.

Hi Dayna,

An appointment with Dr. Grubb requires both a referral and medical records. I don't know about Mayo...hope you can find some help. i know it is tough.

Thanks, Michelle! I didn't want to be greedy by ordering another batch But I will since you say so!

I totally agree. Life does not work out as planned for us. When I get an affirming response to a post or read someone else express my feelings exactly, it's so empowering!

I just wanted to share that i took some brochures in to my workplace (a cardiac research lab) and they were very well received! I have had nothing but success with giving these out. At first i was reluctant to push info on people, but i've found it really helps them understand more clearly what is wrong with my body.

Is there a way i can purchase more? I only have one left and i want to keep that for possible EMT visits

Hey Steph,

I found a new article from Vanderbilt that might help you. I didn't look at it too carefully, but the abstract looked promising. Let me know if you want me to send it to a different email address. I just used the yahoo one in your profile.

Kristen

I had to bring this back up because at the time i saw this topic, i wasn't able to post.

There are certain types of mold (not your garden variety fuzz on the fruit or mildew in the bathroom) that can release neurotoxins. If you google symptoms of toxic mold exposure (or some of the names-- stachybotrys, aspergillus, penicillium), you can read about some of the short term and long term effects of exposure. This is obviously not a common cause of neurological problems, but it can happen if you have been exposed to them for a certain period of time. Often, professional air testing and a specialist in environmental medicine can make a definite diagnosis.

I just didn't want the allergy thing to be the only thing posted here. It is very common for people to be allergic to mold, but there is a whole other type of mold reaction that is not allergy-based. I'm not saying that it causes POTS, but I wanted to throw out these facts about mold and neuro-illness.

Wow, Sue. They must really want some jurors where you live! Do you know what the letter said? Have you talked to the bailiff personally about the doctor's letter? A letter from a medical professional saying you can't do this should pretty much settle it. I hope you can get this all worked out.

Kristen

That's so great that it's helped you like that! Hope your success continues! I empathize with the trips to the campus pharmacy-- my trips were for Kaopectate

I'm so sorry to hear what you are going through. I can't imagine what it'd be like to have your life line pulled from you like that. I'm sure that as you continue to feel worse the thought of fighting is that much more overwhelming. Is there a way you can share this burden with a family member or even an attorney (or law student?) who could speed up the process? I know my dad has fought some battles for me when i felt too sick to even think of fighting. (He can be more intimidating and attention getting than me too.) You deserve this drug.

Kristen

Hey thanks for the great feedback, and letting me know i'm not alone...!

Suzanne-- thanks for the empathy! I still cannot tell what exactly causes it...if it's the physical stress of sitting up, or the mental concentration of keeping up with conversation or a combination of other factors i'm not thinking about. do you notice a pattern or trend with your symptoms? I haven't looked into CFIDS very much, but will do some research on it.

lthomas-- that's a really good insight. a friend of mine does research in that area specifically and mentioned B12 as something i might want to think about. At the time it was just a general suggestion about my multiple chemical sensitivity but if it would specifically help this symptom, i think it would be worth asking my doctor.

nadine-- i feel this way in the morning too! No matter how much sleep i get, i always wake up feeling like i can't move because of muscle aches. I usually "warm up" and feel better after a little while, but like i said, if i try to do any activity outside of laying around the house, i get the muscle aches more severely as a consequence over the next several days.