Crazy New Symptoms...

[Aimes]

I've mentioned this before, but this flare has been full of crazy new symptoms for me. I had a hectic weekend. I volunteer as a Wish Granter for the Make-A-Wish Foundation and we had our annual fundraiser this weekend. Followed by a baptism and my body is protesting! After the fundraiser, my joints hurt so bad I could barely walk. I've always had periods of hip and knee pain but it kind of runs in the family and doctors always blew it off as due to the fact that I grew so fast. Now I'm wondering about EDS. I can see a trend in our family.

Anyways, I also had an "episode" on Sunday. It wasn't all that unusual for me. I was rushing getting ready for the baptism (because of the dumb time change), so I'm sure that's what triggered it. It was my normal tachycardia, stomach ache, cold sweats, all of which went away after a bowel movement (sorry for the tmi). Well, this time I decided to take my blood pressure during the episode and was shocked! It was 175/124! A few minutes after the bowel movement, it was back to my normal 105/60. I also had a weird experience yesterday. After this hectic weekend, my head has been feeling full of pressure. This is another thing I've dealt with a lot with this flare that I usually don't. It gets worse when I push things and I suspect it has to do with inflammation. I've already had a blood test that has shown inflammation in my body, they just haven't pinpointed where. But yesterday it was especially bad and after I stood, I had a moment where I was completely deaf. I could not hear a thing! I just stood there in complete shock. After what seemed like an eternity (but was probably only 30 seconds), it sounded like wind rushing through my ears and then my hearing came back. So strange! I've had non-stop tinnitus with this flare, but this was something completely different and scary!

Has anyone else experienced these things?! I'm soooo anxious to get to Mayo next month! It can't come soon enough! :-)

[bebe127]

Aimes,

So sorry you are having such a time. Good on you for being a Wish Granter, must be so rewarding. Years ago one of my daughters' best friends had a wish granted from MAW after she suffered an AVM (aneurysm type thing). Thankfully, she survived and is living a normal teenage life today.

Your episode sounds a lot like mine at times. I usually have these when I'm stressed, like every Friday morning when I have to take my kids to their homeschool co-op where I teach a class as well. I also feel better after a BM, weird...(sorry too if tmi) but that is usually the last thing I do before leaving the house! Never have checked my bp though, it would be interesting to see if I have similar results. I tend to have bp on the high side already.

I've experienced the whole "deaf" thing too! It is so weird!! Mine doesn't happen often, but when it does (I can't even remember what really causes it or what I"m doing at the time) my hearing is just gone, like you in a few seconds it comes whooshing back. I've had this "deaf" thing for quite sometime now, before I was even diagnosed with anything or had any health issues. I've had migraine type headaches for years and sinus issues too. I also have tinnitus that has progressively gotten worse over the last year and have been experiencing some hearing loss as well (just wrote about this this morning on my blog). Haven't mentioned any of this to my dr. as I usually don't go in to see him but twice a year, once for med renewal and once for physical. The physical is coming up shortly and I'm going to discuss it with him. I also suspect MCAS for myself and hopefully will be able to get that checked into in the near future.

Sorry I don't have any answers, but unfortunately I know exactly how you feel

Feel better soon!

[bebe127]

Aimes,

I was re-reading your post and thinking more on the whole "deaf" thing. You said your head feels full of pressure and it gets worse when you push things. I'm not sure what you mean by this, push as in push a shopping cart or stroller, or push as in doing a push up, or pushing, like while having a BM? I only ask this because if it is the latter two (I know for me anyway) holding our breath tends to occur at the same time whether we realize it or not. As I was thinking about this I pinpointed when my temporary deafness occurs, when I'm pushing/holding my breath. Doesn't happen all the time, but I think it might have something to do with pushing/pressure/bearing down/holding breath. Hmmm....

[Aimes]

Bebe, sorry to hear you also struggle with these issues! I always hate to learn that other people struggle but find comfort in knowing I'm not alone! :-) "Push" was probably not the best term to use. I didn't mean it in a literal sense. More like pushing my limits. If I over-do it, so to speak. If I'm overly active during the day, I notice a lot of head pressure at night. Not necessarily a headache, but actual pressure. It manifests everywhere. In my sinuses, ears, and around my brain if that makes any sense at all! I can usually sleep it off and feel somewhat better by the next morning. That's why I feel as if it's an inflamation issue. If I rest, the inflamation goes down and I feel better. I don't know, just a guess!

[bellgirl]

Aimes, you are referring to the valsalva maneuver, holding your breath, having a BM, straining in any way, actually all help your body get back in balance, especially heart rate and blood pressure. It works for awhile...as far as the fullness in your head, I've had the same, including constant tinnitis. Have you been to an ENT yet for hearing tests. They need to rule out ear issues like Meniere's, because dysautonomia can include ear issues. I had to have ear surgery to reopen my eustachian tube after a virus once. So it could be dysautonomia. I have the same thing happen with my eyes, horrible blurred vision. I may as well not have my glasses on for correction. It returns back to normal after a flare. You might also want to see a Neurologist, too, if you've never been to one for an MRI. I also have had unequal pupils before, too. I've never gone deaf, though.

Edited March 13, 2013 by corina
medical advice

[Joann]

Aimes,

I don't experience the deafness, (at least I haven't yet). But the rest of the issues are all things that happen during my "episodes" especially the high bp. The diastolic number often scares me. I also usually have to go to the bathroom. I don't remember my bp coming back down from that though, I usually have to lay down if it goes that high. My head also gets that full feeling, I describe it as if a bicycle pump is pumping so much air into my head it is going to explode! My body gets really really tight and sore when the bp goes really high.

Can't really help you as to why or what to do, but just let you know that others experience it too.

[Aimes]

Again, I'm so sorry to see others suffer with these symptoms! Kim, I've heard of the valsalva maneuver. Doctors suggested I try "bearing down" to slow my heart rate. This is going to be too much information again, but these aren't really the kind of bowel movements where you bear down. Ha ha! The things we talk about! I can't figure out if the bowel movement causes the episode or vice versa but the episode always seems to end shortly after. I also have vision issues with my flares! It's as if my eyes can't focus and my glasses provide no relief. But, like you, as soon as my flare calms down, my vision returns to normal.

Joann, the bicycle pump is the perfect way to explain it! It's a terrible feeling! This whole flare just has me so baffled! Before, my main complaints were tachycardia and low BP. I learned how to manage them, avoid triggers, and was living a very functional life. Now, everything is different. High bp, episodes of bradycardia, muscle issues, digestion troubles, the list is never ending. I still pray that they will soon find a simple solution for all of us. Like a light bulb moment, "Oh, hey! Those POTSies are just missing a certain type of enzyme!" Ha ha! I won't hold my breath for that moment, but I do feel like researchers are getting closer. I'm amazed at how much they've learned since I was last at Mayo Clinic in 2007!

[Joann]

Aimes,

All of those issues you just listed are things I have dealt with. I also have scoliosis. I will say my digestion issues were awful last year, but now they are getting better unless I am in the middle of a flare or "episode" then it comes rushing back. Still a year ago today and for a good 4 or 5 months I was miserable almost all the time. Now I am having more times where I feel better. Now normal but not as awful, I think it is a combination of things, bp medications (which I think probably still need to be tweeked), learning some triggers, gaining back weight and some strength and not doing as much, probably controlling the panic I feel when it occurs. The pressure you speak about happens to me during bad flares, but also yes, if I push too much along with the head pressure, I will get it around the nose (the sinus) area, have no idea what it is or why.

But I am still going for testing and answers, I am hoping once I get some more answers I will be able to better manage this. And I hope you are right, that they will figure this out soon for us. I was trying to search the other posts, were you the person that mentioned you have bloodshot eyes? I was reading posts and unable to respond at the time. This is something I haven't been able to figure out, maybe the meds or maybe symptom, but my eyes are always blood shot, but actually get really bad when I try to put eyeliner on or any other eye make up. It is as if my blood vessels burst with the lightest touch. Which scares me, what the heck are the other blood vessels in my body doing?

[Aimes]

Yes I also have blood shot eyes now. I was also recently diagnosed with mild scoliosis! We have a lot in common! From what I've read, I really feel like I might be dealing with MCAS but we'll see what Dr. Goodman thinks! April can't come soon enough! :-)