faint factory

Mine has gotten worse pretty suddenly, like you. I finally had to get officially diagnosed and medicated for the first time. I felt like I was improving, and thought perhaps I was going through a phase that had passed. This past weekend I couldn't take my medication and felt absolutely horrible. It was depressing to realize I've been getting worse and the medication was hiding that reality from me.

I get depressed sometimes, because while I always just kind of assumed it would work itself out... it just might not. I might keep getting worse. Digesting that has been really hard. No one I know really gets it, either, because I LOOK fine and I do a good job hiding my symptoms when I can.

Anyway, my point is, you're not at all alone. I think a lot of us especially struggle because so many of us are quite young, and look healthy. It ends up that we hide our feelings about it, because we fear seeming nuts worrying about an "invisible" medical problem.

I can't drink anything anymore. I think if I had booze before my tilt I would have lasted more like 30 seconds than 2 minutes. With alcohol I feel like I would if I went without eating or drinking all day and then skipped my meds.

So far today I'm headache free and thrilled. I've been taking midodrine as usual today since I woke up without a headache.

It was such a wake up call to go without it for several days, though. I thought I had been doing better, but going without made me realize I'm still in really bad shape unmedicated.

Glad you got some answers. I also go into asystole when I pass out - under 3 minutes in my tilt. It scares my friends and family more than it scares me, haha. I've always come back so I figure I'll keep coming back. I do tell my close friends that they need to get me flat ASAP because sitting there unconscious is bad enough, but I can't sit there in asystole for an extended period. It happened to me once and it was miserable.

Beta blockers didn't help me and I felt terrible on them. I have florinef and midodrine. I take florinef only on my worst days because it makes me fat if I take it regularly and I don't notice its effects much. I got bumped up to 10 mg of midodrine 4x a day, and that's a good routine for me. I also wear Spanx for light compression much of the time, depending on how I feel.

I have had POTS as long as I can remember, and I've had very regular headaches for as long as I can remember. As a young teen, I had a bad headache every single afternoon. Now I'd say I have headaches 4 days out of the week. I get migraines as well but thankfully they're less frequent than they once were. I fully expect to give myself internal bleeding with all the ibuprofen I take.

Luckily it doesn't seem to cause them for me unless I am fully reclining right as it's kicking in, but I assume the pain will be excruciating if I take it while already having a headache. Normally not a huge deal, but it is when the headache lasts for days.

I take midodrine, and a lot of it. When I have a headache, I typically skip the doses that I'd normally take because I figure it'll make it worse, since just laying down while on it causes trouble. I have had a headache nearly constantly for four days now, and have been afraid to take midodrine, especially when I'm taking painkillers. So of course I feel worse and worse each day, and if it progresses the way it has been I'll be stuck in bed by tomorrow. What do you guys do when you have headaches?

Thanks for the info. I tracked down a doctor just now who is covered by my insurance and apparently is familiar with MCAD, mastocytosis, AND POTS, so I think I'll give him a shot first. Apparently he is not afraid to refer people to the well known specialists if necessary. I have a PPO so I would get some insurance coverage if I went out of network, but I might as well go to the local covered guy if he is knowledgeable enough to tell me if I'm on to something.

My actual time intentionally sleeping is from 6.5 hours to 7.5 hours, but I spend a lot of time really tired and tend to accidentally fall asleep a couple times in the evening. So I reduce my proper sleep time because otherwise I'd be in bed 12 hours a day.

Julie, I did some further research and noticed that it seems to already have been connected to the same gene (c-KIT) that, when mutated, can lead to mastocytosis. There's even an article (unfortunately in Swedish!) titled "Mastocytosis or piebaldism--the KIT mutation decides" which seems to indicate that the mutations are closely related. Perhaps I'm such a mutant that I wound up with both! Heh. This article also mentions that both mastocytosis and piebaldism are related to mutations of the same gene: http://www.ncbi.nlm.nih.gov/pubmed/9519779

Once I started Googling mastocytosis and piebaldism instead of MCAD and piebaldism, I found quite a few mentions of studies indicating that the two arise from similar mutations of the same gene.

I am in the DC metro area.

I don't even know that it's worth being properly diagnosed because even if the tests came out negative I don't think it'd be accurate.

After that piebaldism post, I learned for the first time that the piebaldism I was born with could actually be related to my POTS. I researched a ton over a few days and discovered that both the piebaldism and mastocytosis are caused by mutations in the c-KIT gene. With the well documented connection between mastocytosis and POTS, I find it extremely difficult to believe that mastocytosis WOULDN'T be the link between POTS and piebaldism, especially when I have had POTS since I was a child and none of the other causes seem to apply to me.

On top of all of this, I have recently noticed that I've developed a gluten sensitivity which I assume is common in masto. After reading about mastocytosis, I started on H1 and H2 antihistamines as an experiment, and after several days of this I have noticed some change in the worst of my POTS symptoms.

I primarily think I must have this because of the link between masto, POTS, and piebaldism. It just seems extremely hard to believe that the established link between the two rare diseases somehow wouldn't be the case for me when I don't have any alternative cause of the POTS, and no history of anything related to piebaldism.

I guess I'm just sort of thinking "out loud", but I'd be interested in thoughts. I don't think it's worthwhile to get any official testing done as I don't have skin involvement so I believe it would require a bone marrow biopsy, and if the results were positive, the treatment is to do what I've been doing with the antihistamines.

Thankfully I've never been a big drinker either, so it isn't too much of a loss, but I do wish I could at least tolerate it enough to not have to absolutely refuse to try a drink, etc.

I am even worse today! I don't see myself making it through the work day today.

Also, my heart rate monitor continues to fascinate me. My resting heart rate while sitting is running 105-110, about 25-30 bpm above normal. TWO DAYS after having a little alcohol!

Thanks guys. I am still loopy and dizzy today and it *****. And I have slept even more than usual.

I gave up drinking in public a while ago, and would only drink if we had people over at home so that I could go to bed if I wasn't feeling well. Last night we had people over and I had one shot and half a Woodchuck and I feel terrible today. I used to be able to drink most people under the table but I guess those days are over.

How do you guys explain to people why you don't drink if someone asks? I get asked this a LOT because I'm in my mid-20s, and it's hard to explain why you won't have even one wimpy drink. I feel like "I don't drink" makes it sound like I'm pregnant or a recovering alcoholic or something, but "I can't drink for medical reasons" probably opens up more questions than it's worth.

Yeah, it's definitely one of those things where you know it when you experience it that first time. For me, it's like I space out and can't snap myself out of it, but I'm aware that I'm spaced out. I can feel that I am noticeably dumber, which is really frustrating. I notice it a lot in conversations with my boyfriend. I am constantly asking him to repeat himself or he's asking me if I heard what he just said.

Midodrine has helped me a lot. I take it an hour before I need to drive or do anything else requiring intelligence/alertness.

I am on 0.1 mg/day and I'm good about staying well hydrated.

I haven't peed since I woke up this morning. It's 9 pm...

Thanks for making this post! I had no idea whatsoever that my piebaldism might be related to all of this. It seems impossible that I could have all these rare conditions without them all being related so it seems like MCAD might be the link. Like I said, though, I know nothing about MCAD.

Someone translate this for me.

http://www.nature.com/leu/journal/v12/n2/abs/2400906a.html

I do, yes. But yeah, you have it at birth. I don't even know what MCAD is. Guess I should check.

I have had a bunch of them as long as I can remember and I'm only 24 now. You'll get used to them.

All I know is that they don't seem to matter for mine. I started having issues long before puberty, no change in symptoms through puberty, no change when on various birth controls, and the first significant worsening started at 23 following no change in BC, no pregnancy, etc. I also don't notice anything changing throughout my monthly cycle. Hormones certainly trigger some people, but it doesn't seem to be the case for me at least.

Is that typical? I got a heart rate monitor at the beginning of the week. My typical resting heart is pretty fast, and while sitting is about 80-82. Today I feel particularly symptomatic, and my resting heart rate while sitting has been 68-70. I get my normal 30 bpm increase upon standing. Thought it was interesting that I feel so different when I'm nowhere near bradycardic.

I wonder if this means that my parasympathetic nervous system is overreacting today.

Midodrine has helped me a lot. I don't get scalp tingling or chills the entire time but kind of in waves, and I'm a freak who kind of likes it because it's nice to know it's working. When I need to study or drive I take it and wait for the tingles to hit before proceeding. I wouldn't be able to drive anymore without it. I just can't focus anymore and like you said, I can tell I don't have enough blood to my brain. I make sure to take it an hour before I need to drive and it helps immensely.

My only real problem with it is that I'd really have to be taking it every couple hours to feel "balanced" all day, but no can do. I take 10 mg three times a day (or many days only twice, depending on whether I need to be useful in the evenings or if I want to lie flat on the couch to watch TV).

It has helped quite a bit with fatigue, but I can definitely tell when I'm reaching the four hour mark.