Katybug

I took me about 2 months to really notice that florinef was helping....this like less dry eye/ mouth, increased bp on a consistent basis, not as thirsty all the time. What's a GI flapjack? And I'm not sure I understand your question about potassium.

Welcome aboard!

Hi josh, I'm sorry there are some inaccuracies in your records. I have found the same when I first started getting my records. Now that I have been with the same docs for a while, I don't have that issue any more. I hope getting a private doc on your side will help resolve some of the issues you've had with your health care providers. I don't know what the cardiac records mean but I did want to mention that Lyme is one of the things that can cause T wave abnormalities. Just remebering some of your other symptoms, that might be worth talking to your private doc about when you get an appointment.

Lattegirl, Yes, the fatigue is a management issue and I think what helps is different for all of us. My cardiologist, early on, said "Well imagine being in an aerobics class all day long, wouldn't you be tired? Your heart is in aerobics class for most of the day." Things that either help me or I have heard others say help are: being well hydrated, compression gear, resting when your body says, observing how many hours of activity you can do without stressing your body and then sticking to that even if you haven't "hit the wall yet", ADHD drugs for some (off label use for POTS patients ), mestinon, controlling sugar levels. I'm sure there are others. It is trial and error to see what works for you. Also, my geneticist talks about the Law of 5%. If you can gain 5% relief from one thing, 15% from another, 10% from another, etc., you can build a lifestyle plan that cumulatively will give you some quality of life back.

I haven't found any side effects from florinef other than headache. But, I do find that when I push myself through activities (which is what I'd be doing g if I worked 4 days a week on my ft.), I have a build up of fatigue. I can push myself but it has a cumulative negative effect, and, eventually, I crash and feel worse and it often will take days or even a couple weeks to recover.

I just thought of this....you might want to get a surveillance camera you can set up in your bedroom that can record these episodes. That might help get a doctor's attention and help them diagnose what these episodes are.

It's so good to hear Tyler is continuing to make progress!

Here is a link to another thread on this forum that has several really good POTS papers posted:

UngracefulEgg, if it's Dr. Francomano, her info is on our physician list. I see her too! She is wonderful!

I'm thinking a sleep study could give you a lot of info if you can get a doc to approve it. And, since you know these episodes occur more frequently the week before your period, you might see if the doc will schedule the study during that week (nothing wrong with hedging your bets! Lol!)

Just to add to the above responses, there are several types of dysautonomia, POTS being only one of them. As MomtoGiuliana noted, POTS is diagnosed based on an increase in heart rate from lying to standing. However, there are sub-types of POTS also, and, one of them has a hallmark of also having an increase in blood pressure upon standing referred to as hyperandrenergic POTS or Hyper - POTS (this doesn't determine if a patient has POTS or not, just what treatment might work best for that patient.) If you feel like you've hit a dead end with your wife's current docs, you might see if there is a doctor on our physician list near you. The docs on our list have proven to be able to diagnose dysautonomia and associated conditions. Here is a link: http://dinet.org/index.php/physician-list?view=physicians

I think this a question best discussed with your doctor for accurate information on how this could be affecting your symptoms. From an experience perspective, I was put on Depakote after my POTS dx for migraine prophylaxis by my POTS neurologist. I did not experience any adverse side effects related to my POTS. I eventually stopped this med because it stopped working to prevent my migraines. In fact, at the time it stopped working, I also started to have a bad slide in the control of my POTS as well. This backslide has continued and I've been off the Depakote for well over a 2 years. I also happen to be prone to low bp but it didn't seem to make it worse.

Hi there! I have bad days when I can not do anything and am in bed or on the couch. They aren't permanent. Hang in there!

Glad you had a good time, Bigskyfam! You're welcome!

I would like to give a warm welcome to our newest members! We're so pleased you found our community and look forward to chatting with you! Please help me welcome: Caitlin Jpsecond outdamnspot TaylorRose UngracefulEgg

I actually had a blood test several years ago that showed low B12. I did B12 shots with a neurologist. My levels of B12 improved quickly. However, I didn't find any benefit to my symptoms. About a year after I stopped the shots, I read an article that said often people low in B12 are also low in the other B vitamins but docs don't generally test for the others because it's not "popular". (Sorry, I don't have a link to the paper. I've tried finding it but I can't.) Anyway, based on that paper, I started taking a supplement that has a well balanced B- complex (a combination of the B vitamins.) This helped me more than the B12 by itself. It gives me a little more energy. It's not a miracle cure, but, if I skip it for a couple days, I can feel my fatigue building up.

I was, at first , quite concerned that the increase in the mestinon caused the gut issues. So, I dropped back down to the 1/2 tablet, ate yogurt like mad for several days to help fix my gut flora from the antibiotics, and then went back up to the full tablet 5 days later. I didn't have any adverse reaction when I tried the whole tablet the second time, so I do feel that this time around, it was the antibiotics. However, I am only cautiously optimistic that I won't have any GI issues as I increase the dosage. My GI tract seems to be the most susceptible part of my body to...well, anything! Lol! So, my plan is to increase the dose by a half tablet at a time and give at least 2 weeks (more if needed) at each new dose. I do have a question....this past Wednesday, the hematologist asked me if I was having any urinary side effects and I said no (because I wasn't.) Then, Friday evening, I started to feel like I have a mild UTI. The only urinary side effect I find listed for mestinon is urinary frequency. Does anyone know if there are other urinary concerns? My PCP tries to keep up but doesn't always have the knowledge and I'll be talking to him tomorrow about the UTI symptoms. If there is any possible relation to the mestinon, I'd like to bring that to his attention. Thanks!

I am a patient of Dr. Khurana. He is very knowledgeable and compassionate. When you first meet him, he may seem a little clinical but he really has a good sense of humor, is practical, and kind. He does have an office in Columbia, MD in addition to his office at Union Memorial Hospital, so the drive to Columbia should be a bit more manageable. (I have been driving from Baltimore to Georgetown to see a specialized hematologist and it is an all day affair because of the traffic, so I understand the concern.) If you want an opinion, in general, I do think that having a dysautonomia expert on your medical will be helpful. I have found that with my POTS, EDS, and MCAS , several docs have a basic understanding of them but either their understanding is not in depth enough or they have some misconceptions. I find my docs that specialize in these areas have a much clearer understanding of the disease, treatment, and complications. Take care, Katie

Hi username, This is the most comprehensive MCAS paper I've found to date. It has a list of the various things that should be considered and tested to diagnose MCAS. http://www.wjgnet.com/2218-6204/full/v3/i1/1.htm

Update: Mestinon is going well so far. When I went from 1/2 tab to whole tab I was also on a Zpak for bronchitis. I started with some abdominal cramping and diarrhea. But, I think that was the antibiotics, not the mestinon. The upside: So, I've been on one tablet once a day and I do get a window of 2-4 hours (which starts about 11/2 - 2 hours after I take it) where I feel pretty good from a POTS perspective. I don't get the build up of pressure around my heart from stooping/bending over, I am not out of breath and tachycardic from going up the stairs in my house, I have more energy, am able to be upright and do normal daily activities. The downside: It is short lived (but the goal is to eventually titrate up to 3x/day), it hasn't controlled my POTS the last 4 days when my migraine pain was in the 7-8 levels (not sure this matters as I'm unable to function with that level of migraine anyway), it is expensive even with insurance (my monthly copay when I take it 3x/day will be just under $100.) Decision: I'm getting enough benefit from it that I will be increasing the dose over time. If each dose gives me 2-4 hours, that could really add up fast!!

http://forums.dinet.org/index.php?/topic/27601-your-go-to-high-salt-beverages/#comment-255724

http://forums.dinet.org/index.php?/topic/27699-is-baking-soda-sodium-bicarbonate-an-alternative-to-salt-tabs/

http://forums.dinet.org/index.php?/topic/27699-is-baking-soda-sodium-bicarbonate-an-alternative-to-salt-tabs/

Sorry, Josh. I'm not familiar with angina.

I haven't had any issues with florinef over time. It's a synthetic steroid replacement for aldosterone which is a steroid normally produced by the adrenal glands. The Wikipedia entry for florinef is a pretty good explanation of how it works. https://en.m.wikipedia.org/wiki/Fludrocortisone