Tuesday

I'm a few days in and so far I am noticing a difference ... I'm just not sure if it's real or imagined though One thing I am not imagining is being hungry all the time! I hope my body adjusts soon, or I am going to go broke feeding myself!

Mornings are awful! I almost feel drunk every morning when I wake up - weak, dizzy, lightheaded, and it's hard to focus my eyes. I am woozy and headachey and it takes me almost an hour to really get to a point where I feel I can function. I also get the weakness, where you can't even make a fist. It's pretty common for me to wake up in the middle of the night for a few hours, and I also have a really hard time falling asleep because of the reflux. I've actually woken up in the middle of the night choking on acid, it was one of the scariest things I've ever experienced. I couldn't breathe for what felt like forever. I do have some good mornings, and some are certainly worse than others. Florinef and salt tabs seem to help a lot, and I am switching my diet to see if that helps, too.

Thanks for all of the advice! I'm still doing a lot of research, but I think it's making more sense to me now.

Hey guys! I am going to give the Paleo diet a try and see if it will help with any of my symptoms. I know one of the rules is to stay away from anything with lots of salt, but there's no way I can afford to give that up! Have any of you done the Paleo diet before? Any advice you'd give for someone with dys trying to make a go of it? Anything you wish you'd known before you started? Finally, has it helped, or have you seen improvements? Thanks!

Happens to me, too. I assume it's too low to measure.

Yup. This is the thing about this illness that I hate the most. I can handle being sick, and if I were sick all the time I think I'd find a way to manage. But tempting me with symptom-free days/weeks/months and then ambushing me with a flare up just keeps me frustrated and struggling.

My doctor has me on prescription strength Prevacid, which seems to help a lot. I was on Prilosec (Omeprazole) before, but if you are also taking Flornief, there is a drug interaction that could be dangerous, so check with your doctor.

Huh! Funny you should post this, because I just saw my doctor yesterday and she is having me tested for it. Should find out soon.

I swear I have probably asked this before, and I did a search and didn't see anything but I'll blame it on the dizziness! I'm on Florinef and it seems to be doing a good job keeping my bp up. It's normal/slightly high, but I am still feeling fatigued, dizzy, and light headed. What gives?! I'm going to see my doctor again soon and I'll mention it, but why would this be? I thought dizziness and lightheadedness was mainly from low bp and low blood volume. I'm drinking tons of water and salt tabs when I need to. Anything else I could try in the mean time? Getting really tired of this!

I usually say, "I'm hanging in there." It lets them know that I'm not fine, and I'm not lying, but I don't expect them to sit and listen to my whole sob story. It fulfills the social obligation of asking how you are, and is light hearted enough that they can move on without feeling guilty about not engaging you further.

I have been diagnosed with Inappropriate Sinus Tachycardia. The highest I've had recorded was about 160 when I was just walking across the parking lot going back to work after lunch. But yeah, same thing. Just shows up for no reason, goes away on its own. Doctors had me on a beta blocker for awhile but that made me feel like a zombie so I went off it. I'm basically just used to it, and I don't worry about it or do anything about it when it happens, since I know it'll just go away on its own. My doctor wasn't concerned, since it was a sinus rhythm.

Whether or not I'm able to exercise kind of depends on the day. I'm pretty lucky in that I have more days without symptoms than with. I try to get to the gym daily when I'm feeling up to it, and I skate and run when I can, too. I have noticed that over the years, working on lower body/leg strength seems to have really helped. Exercise is a bit of a catch 22 for me. I feel like it really does help, if and when I can do it. However, it is also likely to make me feel worse if I push myself too much.

When I talk about crashing, usually I mean my bp. If I overexert myself, I'll get to a point where my bp plummets and I start to feel as though I might pass out. My hr may go up or down, but either way I get lightheaded, dizzy, sick to my stomach, and I feel like I have to sit or lay down before I pass out. I usually don't pass out, but I can feel like I'm on the verge of it for hours.

I'm just curious if anyone has had issues with the side effect of Florinef decreasing bone density? It's listed as a side effect, and I'm considering getting back into a full contact sport so I am concerned about susceptibility to fractures. Does anyone take a bone density supplement in addition to Florinef? Is that recommended?

Whenever I am prescribed new medication I always check it online through a drug interaction checker, such as this one: http://reference.medscape.com/drug-interactionchecker I found two interactions for Florinef and Claritin, and both were listed as significant. So, I figured better safe than sorry!

I used to take Claritin for allergies, but it has an interaction with Florinef. Are there any allergy meds that do not cause problems with Florinef?

I've had the same issue. I can't explain it either, but I get just as dizzy/lightheaded when my bp is normal.

I completed a 12 mile obstacle race last month, and the day I came back to work I almost passed out from being dizzy and short of breath after walking up 3 flights of stairs. It's definitely not deconditioning in my case! I don't understand how I can run for hours and hours and not have any problems, but as soon as I start climbing stairs, I'm done for. Such a weird disparity.

Also, my cardiologist has suggested that if my symptoms ever become bothersome to the point that they cannot be managed with medication and impact my life, that an ablation, or the use of beta blockers and a pacemaker in combination may be an option. So, it seems like it's not necessarily a completely uncommon treatment option?

IST was the first thing I was diagnosed with, and mine is episodic. I do have periods of normality, but sometimes I will have flare-ups, and I also have periods of bradycardia. During a 30 day holter, my hr would go from a resting rate of 80 while sitting, up to around 140 while walking across the room. During that same period, I had a low of 38 while I was sitting watching tv. I have had periods of constant palpitations for weeks or months on end. I don't know what diagnostic criteria they use IST when it occurs alongside other conditions, or how they separate out what is due to IST and what is due to other issues. I have also been diagnosed with NCS, OI, OH, and POTS. Edited to add: I have never heard that IST must be constant in order to confirm a diagnosis, just that the raise in HR is unrelated to physical activity, and not due to anything else. In other words, it's a diagnosis of exclusion, and it just means that they don't know why your heart rate is increasing so they are going to call it IST just to have a way to describe it.

I play roller derby, and I run, and I just completed Tough Mudder (12 miles + obstacles) last month. I was not able to tolerate beta blockers, and there is no way I could have run while I was on them. Maybe you can find another combination of meds that will help your symptoms? Between midodrine and florinef I have been able to find a balance that works for me most of the time (I still have crashes and flares where I feel bad, it's just less often). Edited to add: I was never very athletic early in life, and I only started all of this after I was diagnosed. So, I think it's definitely possible. You may not really be able to plan your training the way you want, and you may have to take advantage of days when you feel less awful than others, and take breaks when you don't want to, but I don't think you have to give up on it.

I exercise regularly, and I play roller derby and just completed Tough Mudder, a 12 mile obstacle course, last month. 1. exercise constantly until they started feeling better? I think my dys has always been a bit milder than most people here, but my exercise started out sporadically. I would exercise when I already felt well, then crash, then go back when I felt better again. Eventually, I could keep it up longer between crashes. 2. find that they felt better exercising with their arms moving around than just with their legs? Not particularly, although I did start doing more upper body workouts to gain strength. I feel that gaining strength in my legs really helped with my circulation, though. 3. try to exercise below a certain heart rate level, and if that rate was exceeded did they feel worse the next day? I have never used my heart rate as my main indicator for my workout. It seems too unreliable since mine jumps around too much. I can be on the treadmill running 6-7 mph, with my heart rate up in the 130's, then it will just drop to around 85 for no reason. 4. exercise lying down only? Nope. I feel that some exercises you can do lying down are good (core strength, etc.) but I feel like cardio really is what gives me the most benefit for relief of my symptoms. 5. found themselves better after building muscle on their arms? I do think it's important to have balanced strength training, but I started out as a skater, and I realized that after building a lot of muscle in my calves and legs, that I was able to tolerate standing/being upright a lot better than I could before. 6 found they felt better after they exercised using or built muscle on their thigh (bike riding as an example) or upper arms? See my comments above. For me, at least, I think that building strength in the calves and legs really helped my body pump the blood back up to where it needs to be. 7. Did you push through any crashes or rest through them? When I first started I would take it easy when I crashed (which was pretty regularly), but now I mostly just push through them. I'm going to feel like crap one way or the other, I may as well at least be making some progress toward my strength and endurance goals while I am miserable.

Oh my god this is amazing!!!! Thank you for sharing this!!!! Last month I just completed my first Tough Mudder, a 12 mile obstacle course race. I had a really tough time training for it, but I am looking forward to doing more races and marathons in the future. I wondered if it would be possible for me to continue, and she really gives me hope that it might be!!!!

I was diagnosed with NCS, OI, and IST about 4-5 years ago. My cardio also thinks I have POTS. I have never been sick all the time, and my symptoms come on randomly in flares. I'm able to hold a job and play sports, but I do have periods of days or weeks where I am pretty much incapacitated. I also have months and months with few to no symptoms. I think it's just different for all of us. There was a period of time I was on midodrine 5 times a day to keep my BP up, along with 4-5 salt tabs and fludorcortisone. Now I don't take any of that, and I can manage just fine for the most part. Although now I'm having problems with my BP being too high.

Last week I had to have an incision & drainage for an infected insect bite on my leg that turned out to be staph. I was prescribed Bactrim (Sulfamethoxazole) for the infection. Even before I went in to have the infection looked at, I noticed that my symptoms were acting up. It has gotten worse since I started the antibiotic. I have been incredibly anxious, my nerves are raw, my palpitations have started back up and I am constantly queasy and lightheaded. I had some Phenergan prescribed for vertigo awhile back but I can't seem to find it Has anyone else had experience with this antibiotic? Any suggestions on dealing with the symptoms?