dizzytizzy

@p8dI'll be sure to ask about next steps/specialists. Since my ANA screen came back negative, I'm not exactly sure where she might go next. At this point, since she is willing to prescribe plaquenil, I'm somewhat content to give her some time to see how it goes. She switched me from daily zyrtec to allegra, as she's had better luck with that in managing hives. I suspect I have something MCAS-like going on and that she is thinking along those lines too, but I'm going to have that specific convo when I go back for my follow-up. Many of my health issues started after a bout of suspected mono in my early 20s, and seem to be the result of a triggered or overactive immune response, so I'm hopeful that plaquenil may be just what is needed to calm it down. It was over a decade later that the dysautonomia diagnosis came and it seems like every few years now I add another diagnosis! I was on the full 400mg of plaquenil, but we decided that might have been too much too soon, so I'm taking 200mg/day right now and will hopefully increase in a few weeks. Some of my heart thumpiness has come back. Maybe it will decrease when I'm on the higher dose and after several months. I also have some pituitary stuff going on and was diagnosed with adult growth hormone deficiency a few years ago. Mixed bag of oh so fun health stuff like most of us here.

@KiminOrlandoANA screen came back normal/negative this morning. I go back and see derm in a month, but I don't think she will pursue further testing unless something weird symptomatically crops up again.

@JimLTotally agree on the doc situation. So hard to find one who is willing to stick it out. I think a lot of people, like me, have just learned to live as best they can with their symptoms. Or at least until the next big health crisis hits, and then the cycle of trying to figure it out starts again. The dermatologist I'm seeing now has a very "can do" attitude and seems intrigued and perplexed by my symptoms. I think she sees it as a challenge, and I'm like, "Good luck. I'm an open book. But just know that many have gone before you!"

@KiminOrlando Dang it! I didn't get the notifications that people had responded to this. Sorry for the delay. Anywho, that's what the dermatologist advised me too. So we'll see how it goes. The heart thumpiness has definitely subsided **knock on wood** But then I started having sun sensitivity about a week into taking the meds and she had me come back in to the office to check it out. I was mid-sentence and she interrupted me and was like, "What the heck is going on with your neck and chest?!" Apparently, I had hives (that's how my skin tends to look which I thought was normal) and she kind of freaked out. Then she grabbed her little bamboo stick thing and scratched it across my back. She said, "Holy dermatographia!" Kind of funny 😁 She said it's really interesting that it seems to be helping my heart symptoms and mentioned the emerging research about Plaquenil being used to treat dysautonomia. Then was said that she thinks it's worth doing a screening for lupus, due to all of the weird rashes I get, the lichen planus, the dysautonomia, the small fiber neuropathy. So I'm waiting for an ANA screen to come back. I had a positive one in 2015 (ANA positive, but none of the antibodies for anything were positive), did the rounds with a rheumy who eventually gave up and said he thought something was going on but it wasn't confirmed with labs so there was nothing more he could do for me. I'm not holding a lot of faith in the ANA to come back positive this time. And I'm really reluctant to do the rheumy circuit again. At least I'm on the Plaquenil now for the lichen planus crap, so hopefully it will help all the other things going on too.

Reigniting this thread to say that I have a slew of AI issues -- hashi, oral lichen planus, lichen planopilaris, dysautonomia, etc. Electrophysiologist mentioned that same study to me at my last appt in November. He was bummed that COVID shut it down. He said that in many cases, they now believe that POTS-like syndromes are related to post-viral infections that impact/alter immune function or some other thing that triggers a change in immune function. He feels strongly that there is an AI component. My dermatologist just prescribed Plaquenil last week for me -- 200/mg twice daily. She's hoping it helps with all my lichen stuff going on. Ran it by EP and he's cautiously optimistic that it may help dysautonomia symptoms as well. I'm only on day 3, but I've noticed that I do not feel so heart poundy all the time now. Usually it is quite prominent when I am sitting down. I have had stomach cramping here and there with it, but not nausea, vomiting, diarrhea yet....and I hopefully don't. Off to read the article @Pistol shared!

Hey everyone, I had an extensive workup with endocrinology recently and received my results yesterday. I have Hashimoto's and we knew that my thyroid function would be off and a dosage adjustment would be required. However, what I was not expecting was that my IGF-1 was extremely low, about 1/3 of what it should be for my age. The endo called it a severe human growth hormone deficiency. He also performed QSART testing and said I had some neuropathy in hands and feet, which he thinks may clear up once we get thyroid dialed back in. My hands/feet are eternally freezing right now. I have to go back in two weeks and do a stim test called an insulin tolerance test to confirm a true deficiency. He asked if I ever had a severe head injury like a concussion. I have not. From my research, I know one of the other primary possibilities of adult-onset growth hormone deficiency can be a pituitary tumor. He's the type of doc who takes things one step at a time and doesn't want to speculate about causes until we get the stim test done. He did say that this may be a contributing factor to the unrelenting fatigue I've had for a decade+. Anyone have experience with IGF-1 and/or pituitary issues/tumors, etc?

@bombsh3ll: I've tried the salt in the water trick before and I just couldn't stomach it. Much easy for me to add pink salt to my food versus try to chug down saltwater. Gives me the heebie jeebies just thinking about it 🤢 That's exactly how I feel. Like I lose the water each night and then the whole thing has to start over again each morning. I've noticed that throughout the day I get more and more bloated (i.e. pants tighter), but after peeing overnight a bunch of times, the bloating disappears by morning.

@StayAtHomeMom: Yes! My salt was always on the low end of normal when measured and I was worried that it would spike too high once the EP put me on the high salt diet, but it has stayed in range, sometimes higher and sometimes lower in the range. He did tell me that I needed to eat a high potassium diet along with it as I think it helps to maintain the appropriate balance.

@yogini: Gotcha. Thanks for the info. I think I (and we all do probably) get so excited when we have a period of improvement and that can lead to overzealousness and put us back to square one if we make changes prematurely. I'll stick with the treatments while I'm working on some of the other lifestyle improvements. I have a follow-up with the EP in late October. If I remain relatively symptomatic through then, maybe a trial of easing up on some of the meds/fluid/salt might be on table.

@Nan: Did you switch to that diet after diagnosis or were you on it prior to? I had been following a low-salt/no added salt diet for about six months prior to my symptoms and eventual diagnosis. However, I was also hardly drinking any water at all for a full year preceding getting sick. I mean like less than 8 ounces a day. I just never drank anything! So I'm wondering if I wasn't actually largely dehydrated when symptoms came on. My EP latched onto the fact that I had been eating a low-salt diet as he said that many people end up coming to him with dysautonomia symptoms after following that type of diet.

@MomtoGiuliana: I'm hoping to get to the "as needed" basis that you use. I've consistently improved since April of this year, but have really stabilized quite a bit over the past two weeks. I'm working on some other lifestyle/mental/emotional changes that I feel have been helpful and am considering pulling back on some of these other measures - one at a time! - to see if I can eliminate anything.

@yogini: I've been doing the salt/water dance consistently since March. While I've made strides, I'm unfortunately not sure if it's attributable to the salt/water or perhaps med or lifestyle changes. I'm considering doing a trial where I drop salt intake down to more normal levels and see how I feel. But then I get scared to change the routine. Argh! Drives me nuts

@StayAtHomeMom: I've been somewhat obsessively tracking salt consumption. I don't feel like I'm necessarily in tune enough with my body to know when I need more salt vs something like more water, know what I mean? So I've just been staying in the guidelines the EP gave me. Hoping I can get to the point where I don't feel the need to track it.

@WinterSown: Yeah, that's why I haven't ever tried the salt pills/sticks. I've heard way too much about them being hard on the stomach and also people not absorbing them properly. Plus, I'm trying to do things as holistically as possible and get the nutrients I need from food as opposed to pills. I just sometimes wonder about the efficacy of increasing salt loads so much. As the months have droned on, I feel really puffy and my stomach is distended.

@statesof: Thanks for chiming in! I fully expect responses to be across the board on this one I am thinking about trialing a period without such high salt levels. I'm a bit skeptical about the low blood volume diagnosis my EP has slapped on me as there hasn't been any testing to actually confirm that.

Hi all, I know the standard advice for POTS and certain types of dysautonomia is to increase both fluids and salt intake. Is there anyone here who isn't doing loads of extra salt and having good results? I never ate a high salt diet before all this and now try to ingest my salts via pink salt sprinkled on food versus salt pills or processed foods. I feel like the increased fluids and salt combo is causing fluid retention in my abdomen which is really uncomfortable....then I feel miserable when trying to exercise because I'm literally SO full of fluid shaking around in my stomach. It just seems like the recommended salt intake (and sometimes even the water intake) is often excessive and I'm wondering how much difference if has made for people or if the exercise, meds, and lifestyle changes have been more beneficial?

Oh interesting @Pistol. It just reconfirms how individualized all of our treatment plans need to be. I'll keep that in mind as we proceed with changing up these meds.

@WarpedTrekker: I take orthostatics every day. My EP has me lay down for at least 5 minutes, take BP and HR. Then stand and wait two minutes, then take BP and HR. I take BP and HR one last time after standing for 5 minutes. I think a jump immediately upon standing is "normal" and an increase of up to 10 bpm or so after standing for two minutes is within normal limits. A more exaggerated response could indicate dehydration or blood pooling as the heart works harder to oxygenate the peripheral areas of the body. It has to be a sustained increase of 30+ bpm in HR to qualify as POTS though I believe. So while your immediate jump may be exaggerated, the body seems to correct itself and the results are normal. 1. Did the ER give you fluids before taking those vitals? That could skew results. 2. Have you been checked for inner ear issues by an ENT? That could explain dizzy symptoms you get from positional changes. 3. Doesn't AFIB cause wacky HR too? Not saying you can't have both AFIB and dysautonomia, but I thought the former caused widely-varying bpm that bring about a slew of symptoms. Is the AFIB well-controlled?

@Pistol: Appreciate the info. Still waiting to hear back from EP. Months ago when I first became symptomatic, he put me on the calcium channel blocker diltiazem - I believe he thought I was over constricting initially. I had terribly cold hands and feet all the time, possibly a sign of Raynauds maybe. I still had nighttime tachy episodes on that so that's when he switched me to midodrine, which seemed to work better and eliminate some of the daytime tremor feelings when I increased the dosage, but nighttime tachy remained. That's when the beta blocker discussion came up again and here we are in all its glory I've been to two rheumatologists and never been diagnosed with Raynauds. Maybe I'll have to ask specifically about that again.

@StayAtHomeMom: Sounds like a horrific day for your doc! Oh my. I agree with her that a beta blocker can definitely ramp up fatigue, especially at higher dosages. But everyone has an opinion as we all find out

@DizzyGirls: Thanks for detailing out the IIH symptoms. I tend to get a lot of intense, uncomfortable head pressure when lying down too, so you've given me something to bring up to my doctors! I also wanted to say that the "racing" feeling she has...is it more like internal trembling? Like she's running on pure adrenaline? I get that often and my EP said it was due to transient drops in BP as well as probably high amounts of norepinephrine in the body. Never had an actual blood test to confirm it though, so who knows.

@Weary: Yeah, I was surprised at how well I was tolerating it initially as I'm very sensitive to meds. Only a little lightheadedness (while lying down) the first night of the 10mg and then nothing much with the increase to 20mg until about four days in and the dizzy spells started up. I was ready to declare success because it had helped the nighttime rushes so much, but I can't look past the possible side effects anymore - today has been horrible. For tonight and until I hear back from EP, I'm thinking of going down to 10 or 15mg and see how it goes. @Pistol: What are the upsides to taking an alpha/beta blocker as opposed to just a beta blocker? I've read a lot about Carvelidol on here and I think Labetalol too is one alpha/beta that Dr Grubb prescribes often for hyperPOTS patients. I was initially put on Bystolic when I first got sick and the first cardiologist told me it was all attributed to anxiety and the meds would help with that. It decreased the perfusion in my body (because I tend to have lower BP to start with anyway) and my hands were turning blue. So I'm not a huge fan of messing with these types of blockers to begin with but am trying to keep an open mind.

@Peter Charlton so sorry to hear about your troubles. It's always a gamble with the trial and error of meds it seems. Anyone found one daily dose of 20mg propranolol to drop their vitals too much? What other treatments have helped to minimize adrenaline surges?

Interesting topic. The second link is to an article about insulin therapy in pregnancy though.

What are her symptoms for the idiopathic intracranial hypertension? Does it tend to correspond to the wonky BPs? My BP tends to run lowish - 90s/60s - but when I have drops in it, my already waning energy really drops off. Is she having dizzy or lightheaded spells when it drops?