HopeSprings

"Because of OI I couldn't last long at the park and we had to come home before he wanted to, disappointing him as usual. I have been very sick with this for most of his life and feel terrible about what it has cost him as well as me." Oh, I can so relate to these feelings. "Other times it's more like my head if full of cotton or clouds or FOG ...like there is something surrounding all the little neurons so they don't connect well and it takes SO MUCH ENERGY to think or do even the normal everyday things." Yup, exactly. I have a really tough time with short term memory and cognitive function. It's like the information is there, but it takes a ton of effort to access.

Jana -- oh wait, we're supposed to drink lots of water if we take salt? Uh oh. lol. I just take the pill with maybe a quarter of a bottle at around 7pm. I figured the salt would help hold onto whatever fluid is in my system. Is what I'm doing dangerous at all? It's really HARD for me to drink at all. It's like trying to eat when you're really full... I literally have to force myself to drink. By nighttime I get thirsty -- probably 'cause my body is going um hello, I'm getting dehydrated here. It's just odd because most POTS people here talk about being very thirsty all the time.

I dunno, I am in the same boat as you. My blood pressure gets very low at night too-lowest I measured was around 74/39. The last Doctor I saw had a hard time "hearing" my blood pressure (however that works) and so concluded my BP monitor must not be able to "find" my blood pressure and concluded the readings must be incorrect. Simply put he didn't believe it. I argued with him ...to no avail. Have you checked your BP when you first wake up before getting out of bed? Mine is low like 80/40 and then picks up once I get up and especially after having my much needed coffee. It stays low 90's/low 100's all day, then drops again at night. I have been taking the salt at night for a week.. so far no change. Maybe raising the bed would help? I might try it. POTSGIRL -- why do you say you can't take salt at night because you have to urinate? I thought the salt helped us hold on to fluid? I have the nighttime urination problem too.

How do you guys find Doctors willing to do these unusual tests? The ones I see always look at me like I'm nuts when I bring up rare diseases. What Doctor did the 24 methylhistamine and HOW did you convince him/her to do it? What lab did the test? When I tried to have this done at Quest, they said they didn't check for methylhistamine, only histamine. Also, did you have to wait for a "flush" before starting the urine the collection? Glad you are finally getting some answers.

I've decided to give some of the original recommendations another shot. I'm starting with Salt (sodium chloride pills). I've been taking a 1gm pill each night before bed. I'm going under the premise that maybe it will help with blood volume expansion over night/less dehydration? and maybe I'll see less tachycardia in the morning. Not even sure it works this way. Anyway, IF this is going to help, how long would you give it to see an improvement? Is it something that builds up in your system over time or would you notice a difference right away? Thanks.

Julie - I agree that reaction to medication can help with diagnosis. It's great that you found something that works. Do you think POTS and MCAD are two seperate diagnosis or intertwined? What symptoms improved with your medication? I am in Northern NJ and not having much luck with Doctors around here. Definitely if you can recommend someone, please let me know.

I am definitely worse during my period. Are you any better the week or two before? I seem to do better the week before, but starting from Day 1 of my period, everything goes downhill as your described. There is an article about this: http://www.potsrecovery.com/2011/03/pots-and-that-time-of-month.html ---> synopsis http://hyper.ahajournals.org/cgi/reprint/56/1/82 ----> actual article And ditto on the pain below the left rib cage. Mine is more a sensation of extreme pressure. I brought this to my Doctors attention several months ago and he felt around there and said my spleen felt enlarged. He then sent me for an ultrasound of the area, which came back normal (of course - I never get answers). He then suggested it's probably gastritis and to take some Prilosec (whatever). So since this IS the area where the spleen is I would definitely bring this up with your Doctor. How this is POTS related, I dunno.

Smells are a HUGE problem for me. Don't know if it's MCS, part of POTS, part of CFS, or possible MCAD. Julie- how did you get your MCAD diagnosis? Did any testing show it? If you have answered this question before, sorry... I don't remember. I had a Doctor look into it briefly for me, but I think he did the wrong testing (which of course came back negative)and then never followed up with me.

Hi there and welcome. I had no idea NYU had a dysautonomia center??? I am in Northern NJ and have tried like crazy to find a Dr. in this area who knows about POTS. I want a Dr. who can go beyond -- water, salt, florinef, midodrine. I want real expertise like the Doctors at Vanderbilt. Please, please let me know how your experience goes at NYU. Just a few questions - you said Florinef turned you around. Why aren't you still taking it? Also, you said it took a few weeks before you felt any benefit? Were there any side effects? I tried it a few times and each time had weird breathing episodes at night, so have been afraid to try again. Maybe it wasn't related - I don't know. I am thinking of trying it again. You said, "when I napped I would wake up feeling very "sick and brain-foggish" This really struck me because I haven't heard this one mentioned too often. This has always been a problem for me - long before all the crazy POTS symptoms. I think it's related. It's a really nasty feeling waking up from a nap -- I get this very chemical taste in my mouth, heart POUNDING, completely out there/almost delirious feeling. Takes an hour or two to snap out of it. Well I hope you enjoy this site. We can learn so much from eachother here. Oh and I echo your thoughts about Doctors... they tend to dismiss anything we come up with "online" and don't seem to know about most of the things discussed here. It's frustrating.

Alicia -- did the ENT diagnose you based on symptoms or did a test reveal Meniere's? I don't have vertigo, but a constant dizzy/spacey feeling, tinnitus and clogged sensation in ears. I had a test done (forget the name) where they put air into your ears and it showed as "borderline" Meniere's. The ENT changed her mind and decided my dizziness isn't vestibular, but central. I don't beleive this - I have definite vestibular symptoms. Anyway, was just curious what your Dr. based the diagnosis on.

Alicia - just curious - you mentioned you have Meniere's. How was this diagnosed? What Meniere's symptoms do you have? This diagnosis was given to me, then taken away by my Neuro-Otologist. When I got that diagnosis and was told to avoid salt, I was really confused because with POTS we are told to load up on salt. What a catch 22.

What you describe is ME exactly. Everything from dish soap to handcream that I use is unscented. A friend stopped by the other night and he wreaked of laundry detergent. The smell just fills the house (although my husband didn't notice) and makes me feel really ill. I can taste it in my mouth for hours after being exposed, my ears get all cloggy and ringy (ringier), racing heart, more lightheaded, more trouble focusing eyes, cognitive problems. All my usual symptoms get 10X worse. I recently had an incident with a relative who is planning to visit and stay at my house this summer. Despite their best efforts to not wear anything "stinky" .... they always seem to smell of fragrance. Then our time together is ruined because I am more symptomatic. If you regularly wear perfume, it just gets all in your stuff. So I came straight out and asked this person if they could wash their clothes in unscented detergent before coming here. She was offended... and I ended up apologizing and feeling bad. People really don't understand. This is one of the most socially isolating symptoms on the list -- the smells are everywhere.

One more question. Is MCAD episodic? Is it a set of symptoms that appear -very obviously- and only after a specific trigger?

OK, this is where my brain fog and cognitive issues get the best of me. I am trying to understand all that was just written and I can't seem to get it into my head... and I really want to because I suspect MCAD in myself. Julie - how did you get the MCAD diagnosis and where? Sarah - does the fact that you have cutaneous mastocytosis make you more likely to have systemic mastocytosis? How was the skin form diagnosed in you? Thanks

To test for Mast Cell Activation Disorder they would do a urine methylhistamine test. I had a cardiologist check for this. He gave me the prescription, I got the container to provide the urine sample, waited for a flush, then did a 24? hour (i forget if it was 24 or less hours) urine collection then brought the specimen to a lab - I think it was Quest Diagnostics. Unfortunately this lab did not do Methylhistamine testing, only Histamine. My Dr. said that was ok. I don't understand why he said it was ok, because it really needed to be METHYLhistamine. I think the histamine one is done for Mastocytosis --not MCAD. Anyway my results were negative. I can't find the article now, but somewhere in the literature it describes how the test should be given. I think it would be difficult to find a Doctor who knows about this. I can never seem to find a Doctor who knows anything about these rare conditions and most think I'm nuts when I bring them up. I guess call around, do a little internet searching and see if you can come up with someone who might have some knowledge of this in your area.

Just guessing -- could it be the same premise as strengthening the leg muscles to help bloodflow to go upward. Maybe it has something to do with countering "sphlanic pooling." Here's something kinda sorta related. And if not, still interesting. http://www.fitnesstipsforlife.com/stretching-in-the-morning.html

Hi. If I were you I would want some official autonomic testing done. Definitely the Tilt Test. Where are you located? Maybe you can check the Dinet list of Doctors and see one of those ...or someone here can recommend someone good in your area.

I think a rheumatologist or a geneticist.

Now why can't I find a Doctor like this who wants to dig deeper? I told the last POTS Dr. I saw that I was there to find out what might be causing my POTS and he said "if I knew I'd win the Nobel Peace Prize." I brought a whole list of things to explore and never even had a chance to go over it with him. One of the things on my list: mitochondrial disorder. Yes, definitely do whatever work up this Doctor wants. It's great that he wants to explore these things with you! Good luck and please let us know what happens.

Northerndarlene - I PM'd you back, but let me just put it out there in case it helps anyone else. I waited too long before trying to apply for SSDI. I have not worked in over ten years. They require that you have worked 5 out of the last 10 years or within the last 5 years (something like that). I had no diagnosis until 2007, which is part of the reason I couldn't really pursue it. What would I have told them? I am disabled, but I don't know what the heck I have. I also kept hoping that whatever it was would GO AWAY. Once SSDI was ruled out as a option, the Social Security lady mentioned SSI. This is the one where your spouse's income counts. So I can't get that one. So the lesson I guess is -- don't wait to apply.

Oh my gosh Chrissy, I am SO sorry. The panic attack diagnosis is just plain insulting! Have they given you an EEG - maybe it's seizure related? There has got to be a neurologist that can help you or at least properly diagnose you. You were so smart to video the event.

OK that first one gave me goosebumps. How nice for Kylie to have a husband who TRULY understands her condition. I wouldn't wish this on my husband or any family member, but I do feel misunderstood.. like they don't really get how BAD I feel. I have often said to my husband if he could spend just 5 minutes in my body, he would be horrifed. They try, but they will never really know.

Yes all the time, everyday. I feel like I can't focus my eyes, things at a distance look hazy, constantly squinting, very light senstitive, feel very dry, have a terrible time when the day turns to dusk. At times I feel blind, I literally have to feel around to "see." I know it is not my eyes, but my brain unable to process what the eyes are seeing. My vision tests 20/20, much to my amazement every single time. And yes it does feel like my brain, my head, my eyes are wrapped in saran wrap, (good way to describe it) like there is some invisible barrier between me and the world. It's right up there with dizziness as one of my most debilitating symptoms.

Maggie- someone was kind enough to PM me about this too. Now I am wondering if I have bad information. I contacted Social Security last year to inquire about disability. They told me that since I have not worked since 2001, I do not qualify for it. I guess you have to apply within so many years of your last job? I had no idea what was wrong with me for so many years and really just felt too sick to go through the process anyway. How could I apply with no diagnosis? Anyway, then she looked at another type of disability and said I couldn't get it because of my husband's income. I think the difference is between SSI and SSDI - neither of which I can get apparently? I dunno, it's confusing. Then I contacted an attorney and he told me the same thing. If anyone knows any different please let me know.

Have you tried finding to find an attorney who will work on a contingency fee basis? They would get a percentage of whatever you get. I reached out to an attorney about this last year and he said I might be able to get retroactive payments from the time I became ill. So in your case, 5 years worth of disability. In the end I was not able to pursue it because my husband's income is too high, so I was advised not to pursue it because they look at all of your assets and I would be denied. I feel like it's kind of unfair because we aren't exactly rich over here and if I was able to work, I would be able to contribute to the household bills. Since I can't work I feel sort of entitled - maybe it's wrong, but I feel so bad that I can't contribute financially at all. We are struggling. Anyway, enough about me -- maybe you should think about reaching out to a Social Security Disability attorney?