Mbritt724

4 hours ago, bombsh3ll said:

 

I still take them even now, I am afraid of how much worse I might be without them. Also I produce no renin or aldosterone at all, and total mineralocorticoid deficiency is rapidly fatal in humans so I need some form of substitution and would have to take florinef instead which gave me horrible side effects.  The brand I take is Swanson's Licorice Root 450mg capsules, 2 daily. They can be bought online from amazon, iherb and various other suppliers and do not cost a lot. 

It was about a year until the effects started to wane for me. Others have said between a few months and a few years for this to happen so we are all different. I tried a licorice tea once but the taste was absolutely vile. If you do choose a licorice product, make sure it is true licorice root and not the deglychyrrized (inactive) version which wouldn't have the mineralocorticoid effect. 

Ironically my blood pressure is not low - stage 1-2 of hypovolaemic shock is what I relate to - increased BP in an attempt to compensate for low blood volume, however licorice root is said to raise BP as well for those who need that. 

I would really recommend trying it, you might just have as good a year on it as I did - I could walk for a couple of miles on it and even stand a bit too!!! It allowed me to get married standing up for which I will be forever grateful.

B x

 

Thank you so much for all of your answers! I am ordering the same brand on amazon now 🤗

2 hours ago, bombsh3ll said:

No, it basically tricks your own cortisol into mimicking aldosterone in the kidney, resulting in increased salt and fluid retention. It does so by inhibiting an enzyme found in the kidney which normally inactivates cortisol so that it cannot bind to the mineralocorticoid receptors. It is definitely worth a try although for me the effectiveness wore off after some time. I have heard this is similar to other patients as well. Interestingly I have also heard the same about fludrocortisone, which I didn't tolerate anyway due to side effects.

Maybe if I had just kept the licorice root for special occasions I could have kept it working for longer. The benefits were dramatic and noticeable within a few hours of taking. 

B x

Ah, interesting- that makes sense, the tricking cortisol idea. Thank you for your response! I was able to manage low BP swings with tons of hydration and increased salt/ vitassium pills, but am finding I need something more now. Do you know about how long it worked before you began tolerating it? Was it only a few weeks, or months? And did you take pill form or tea? Thank you 😊 

On 8/9/2018 at 11:51 AM, bombsh3ll said:

I had the test in the UK, same principle as DAXOR but it was botched due to the long transport time of my blood to and from the lab across London to be labelled with isotope. The blood was clotted by the time they tried to re inject it and I had lost my IV access. 

I am positive I am hypovolaemic as I feel best at night after hydrating all day, and initially had a fantastic response to licorice root although this waned after about a year. Unfortunately I can't tolerate fludrocortisone. 

Saline helps minimally but access to this is very limited, and most of it is in my bladder anyway by the time the bag is done - may as well just pour the IV bag directly into the toilet.

I would LOVE LOVE LOVE a blood transfusion!

Wish someone could come up with the answer to this. 

I also tried desmopressin which helped me sleep through the night without peeing but didn't help me stand and lowered my sodium too much as I produce no renin or aldosterone.

B x 

 

Did the licorice root help increase aldosterone levels? Which then increased overall blood volume?

Any tips from the pros for convincing a doctor to write an RX for monthly or bi-monthly IV fluids? I've found that 2-3 days after my cycle every month my BP is low for me (averaging around 85/55) and that IV fluids seem to help tremendously. I've gone to an overpriced IV Hydration "Bar" the past few months and have asked my GP and Electrophys to write a letter to insurance to submit my receipts for reimbursement or an RX to receive hydration in office, but they will not do it. I guess, once again, it boils down to many doctors not understanding dysautonomia. Any suggestions on what you've done to convince your doctors it is needed, or should I just suck it up and pay $100+ for IV fluids on my own? 

14 hours ago, StayAtHomeMom said:

Do your research before you see the endo. There are 2 or 3 tests that check for hashi's. They usually only test the one. I hope your appt goes well

Definitely! This is why I’m going to this specific endo, because I have a feeling the others are perfectly content skimming the surface 🙄 Thank you!!  

14 hours ago, StayAtHomeMom said:

Have you been tested for Hashi's? I remember during my research hashi's can cause hyperthyroid and hypothyroid symptoms. It can be kind of crazy. Something you said triggered something in my memory just not sure what. 

I actually have an appointment with an endo who specializes in thyroid in two weeks, so i'll be tested then. all other GPs have said "normal", but sometimes I feel like they don't look deep enough or consider patients as an individual who may be slightly different than their "normal" range. I will ask about hashi testing for sure! Thank you

12 hours ago, StayAtHomeMom said:

I noticed someone mentioned yesterday they take Saltstick vitassium. I did some basic research and it seems wonderful. Has anyone tried it, and what was your experience with it. 

I plan on getting with a few of my doctors this week and see if it is OK for me to try. It is a little pricey. But with my husband's health issues we are having to change things up with low sodium diet at home. I figure this is perfect for upping my salt. And with the cramping I get especially during my menstrual cycle I think my potassium is a little low anyway. 

Thanks in advance for any comments. 

It has literally changed my life. Salt pills made me feel terrible and upset my stomach, this has not been an issue at all! I started with one pill at a time just to make sure I could handle it okay, and find that I really only need one at a time except on really bad low BP days (typically around my time of the month).  I can’t recommend them enough

2 hours ago, StayAtHomeMom said:

Hypothyroid or Hashi's?

Hypo, never hashis. Thyroid was the first thing I thought was going on when all of this started... but all is fine on that front as of now!

On 9/28/2018 at 11:05 PM, StayAtHomeMom said:

Has your thyroid been checked?

Yes, I’ve had hypothyroidism for about ten years... started when I was 17. 

I’m so sorry to hear you’re going through all of this, the beginning stages of navigating all the changes can be so overwhelming! I know you mentioned salt and fluid increases already, but two things that I’ve found life changing for both of those things have been the Salt Stick Vitassium pills (got mine on amazon) and Drip Drop brand electrolyte packets (I drink 1-3 a day). Before these things I was already drinking tons of fluids and eating more salt, but both of these brands have a perfect combo of electrolytes & potassium/sodium.

Compression stockings, as mentioned already, are helpful and even just forcing yourself to walk or move around (I know it’s hard when you feel so “yuck” ;-/)...  I also found that sleeping propped up seems to help tremendously. I hope you’re able to get into your next appointments soon for continued testing - I know the waiting can be horrible! 

1 hour ago, Pistol said:

Yes - I have both hyper-and hypotension. When my BP is low I become clammy, strong heart beat, weak, feeling hot or flushed. This is very different from when I have high BP - chest pain, cold hands/feet, chills, tremors. This can change from minute to minute. 

Thank you for responding  so far, they’ve only diagnosed me with hypotension, but I think the hyper may be a possibility too (just not diagnosed yet) because I definitely have those symptoms too.

Kind of along these lines with quick BPswings that are undetectable, does anyone else get clammy hands/feet and feel hot during low blood pressure drops or days the BP is running lower?

On 9/24/2018 at 12:48 PM, Caty said:

Thank you WinterSown it is hard for me to accept this illness. Have you heard of recovery in a short period of time? How can I accept these changes?

 I feel so bad for my kids, there is so much I need to do!

...it’s easier to cry, feel desperate and mad than to fight it, be brave and force myself to keep doing what I can.... it’s just so hard!

Amen to what @WinterSown said about your friends - people try to write it off but only YOU Know your body & dysautonomia can be so unpredictable! 

On 9/24/2018 at 1:40 AM, Caty said:

Thanks everybody for being there and please forgive my long explanation.

 I am 41 yo. mom of 4 and for the last three weeks I’ve been going through some scary symptoms. It all started with esophageal spasms. I’ve suffered from GERD and severe belching for many years, but they suddenly worsened and my esophagus started acting up. I took Nexium (which I had never used before) and experienced tachycardia at night that wouldn’t go away, anxiety and nausea. Went to the ER and all was normal except a heart rate of 130 and low grade fever. I stopped the Nexium but the tachycardia and pounding HB continued every night and every time I ate. I became extremely tired during the day. During meals I would feel full and nauseated after a few bites, my heart will pound or I would get tachycardia, and felt like I was exhausted. Lost 10 lb and had to get IV fluids.

 Now I have labs (thyroid) an echocardiogram, an endoscopy, gallbladder and pancreas all normal.

This is how it is right now: The moment my body relaxes to fall asleep the tachycardia begins and I get this reflex to swallow which scares me. I am anxious with sudden noises also. 

In the morning when I am awake the tachycardia stops but I feel nauseated, extremely tired and very anxious- thinking I may die soon.

If I stay in bed, symptoms are not as bad but they are still incapacitating specially after the meals.

The strange thing is that at night, after digesting dinner I have a surge of energy. I finally feel myself, the symptoms almost go away and I can think clearly. I feel so embarrassed with our friends that are helping us because at night it looks as if I was faking an illness during the day... they suggest anxiety or depression.

I read the symptoms of dysautonomia and they explain the way I feel. But how can I explain feeling well in the evenings?

 It is a terrible roller coaster because every night I think I am certainly getting better but the moment I am falling asleep the tachycardia comes back and the mornings are terrible.

Please tell me what you think.

So sorry you’re going through all of this! I know it can be scary and so unsettling.  my dysautonomia symptoms actually started much like this, and they were all over the map and confusing in regards to times of day and such  

I think the falling asleep and night tachy is a very common symptom for many of us- it’s just that our autonomic nervous systems aren’t quite doing what they’re supposed to as our bodies settle down to go to sleep & it’s like they get stuck in a fight or flight mode. The same thing would happen to me in the beginning, but it would typically wake me up two hours after falling asleep... tight throat, racing heart... then I would be crazy anxious thinking “what in the world is happening!”.  I ended up being prescribed a sleeping pill for the first few months of my journey and it helped significantly... almost like my body needed to be “retrained” on what it was supposed to do at bedtime. That said, they did a 7-day holter heart rate monitor before prescribing anything, just to rule out any arrhythmias. Might be something to ask for next? A cardiologist or electrophysiologist would do that for you. 

One of my doctors has said that many times dysautonomia symptoms are triggered by varying levels of cortisol and hormones, so I’m wondering if the feeling better at night after dinner has something to do with that? Our hormones and cortisol levels change throughout the day & could be triggering changes in overall blood pressure or other ANS regulated things. An endocrinologist would probably be a great one to look into that!

Check out the dysautonomia-mvp center in Birmingham, Alabama. I have two friends who have gone there

7 hours ago, CalicoCat said:

Not WinterSown, but I did 24 hr BP/HR monitoring, but the same thing happened. The device often failed to register when I was moving and my HR was peaking (per my sports watch), so I'd stand completely still, making my HR drop. I still don't know what my BP does when my HR peaks. 

Very interesting. Did the heart rate monitor pick up anything? I wore two different types this summer, an event monitor (which I would have to push to activate when feeling weird... dumb in my opinion because i couldn’t predict when I would suddenly feel weird) & a second carnation ambulatory 24-7 one for 7 days. My Apple Watch will register having low heart rates but the electrophysiologist said the heart rate monitor never dropped lower than 58 bpm... so I’m just curious if yours picked anything up?

On 9/23/2018 at 11:27 AM, WinterSown said:

I talked about this with my EP last week. The pressure drops are so rapid that by the time you've got a reading it's over--you are getting the recovery numbers and not the event numbers. My EP believes this happens, it's quite real and the sensations they produce are quite uncomfortable. He's been tweaking down my meds and now I am on just one BP drug in low doses but I suspect when that one is cut these drops are still going to occur. 

 

That is SO good to know! That's what my electrophysiologist said too... have you ever worn a 24-hour BP monitor? I'd be interested to know more about what BP med you're on & how long you've been on it/if you've noticed any changes/improvement on it? 

I get the exact same thing and it’s one of the symptoms that drove me to push for so many tests and ultimately reach my diagnosis. Can definitely relate to the frustration of not knowing the root when doctors say BP and heart rate are fine! One doctor did tell me that he thinks it could be quick drops in BP that happen and then I feel the after effects a mknjtr or so later, so my BP monitor doesn’t catch it. I have found that the days I’m the most woozy and dizzy, my bp runs a little lower than my “good” days. 

I was just diagnosed in July, so am still learning, but I’ve found that days when I don’t get enough deep rest & coming off of a day or two with a lot of activity or stress I feel the dizziness the most. Increasing my blood volume with hydration & salt ( Salt Stick pills and Drip Drop drink packets) seems to help a lot. I also find that the days when I don’t get up and do something fairly active early on (at least on the days when I feel good), I seem to have more dizziness. 

7 hours ago, yogini said:

Do you live in an area near bad weather?  There is a hurricane approaching and this can affect BP even a few days in advance. Even without a storm you will have natural,fluctuations in BP - it might not be the salt intake that is causing the low BP. Menstrual cycle is another common factor, for example.

I live in North Carolina, so the hurricane is definitely heading our way! These strange BP changes started before the threat though, so not sure if it's tied to it this time... that said, VERY interesting to note on the menstrual cycle. I had read some study a while ago about estrogen influencing BP, so that would make sense. I guess I should be aware/more sensitive to water & salt intake during that time of the month. 

10 hours ago, MomtoGiuliana said:

My specialist has told me not to "over do" salt bc it can cause the kidneys to waste potassium and some people are more susceptible to this.  It seems that I am.  Also if you are drinking tons of water that may cause your electrolytes to become imbalanced from what I understand.  I would ask your doctor if you should have these tested when you are having significant symptoms.  I try to keep my potassium up by eating potassium rich foods like fruits and veggies.  V-8 juice contains high potassium as do some other juices such as orange and prune.  They can also contain a lot of sugar which may not be good for some people.

My BP can be variable anywhere from 90s/50s to 120s/80s to even higher if I am in a bad flare  I think what can be helpful too is to know what it is when standing vs sitting--is it changing a lot, along with hr.  Personally I don't have any significant symptoms based on BP alone, but if my hr high, or if my BP changes a lot from sitting to standing, I am typically symptomatic.

Thank you, that's super helpful. I think I will ask to have my levels tested simply because I went from a normal diet to a high-salt diet in a very short amount of time. I just want to ensure i'm not completely out of balance. Thanks for tip on V8, I had actually randomly thought of that the other day and will definitely grab some. 

Thanks, also for tips on what your BP is here and there! Also helpful

On 9/6/2018 at 3:42 PM, Pistol said:

@Mbritt724 - an autonomic specialist is supposed to diagnose and treat you for autonomic dysfunction. They may specialize in one area but a true autonomic specialist will be able to pinpoint what type you have and make treatment recommendations. If they only see patients with POTS then they are not autonomic specialists - they may CONCENTRATE on patients with POTS but they are not general autonomic specialists. If you would like to get an exact diagnosis then I would see one of the specialist centers. 

Thank you- very helpful!

I had been managing my random drops in blood pressure well with salt stick pills, drip drop, nuun and tons of water... but today kicked off with a bang when I woke up to feeling like I was fainting in my sleep. Strange, but only way to describe & I could tell instantly it had something to do with my BP. Sure enough,  blood pressure has been low (93/59-ish) most of today (this is low for me), with a few lower swings...despite all the water & sodium, I’m feeling super weak & dizzy.

Questions:

- should I have blood work to ensure this sudden onset of more sodium in my body isn’t causing an electrolyte imbalance (like causing potassium levels to be off)? Does that happen?

- And does anyone have any tips for days when BP swings?

- Any idea what could cause it to be lower today after so many good days? Maybe hormones? Or is this simply part of living with dysautonomia & never really knowing? 

3 hours ago, p8d said:

There’s a list of Drs that treat dysautonomia on the main page of this site.  I love my neurologist who treats me more holistically, all symptoms and body parts involved, as opposed to my EP who mainly deals with BP/HR.

Yes thank you! I've seen that list, but have noticed that most of the docs have specialties (e.g.: POTs, Ehlers Danos, etc.)... will doctors take on new patients who have yet to have an official, specific dys diagnosis? I called one at Duke and they said she was only taking POTs patients... 

2 hours ago, JaneEyre9 said:

I second what p8d says about a holistic approach. I did not start to feel better until I saw an integrative medicine specialist (an MD) who changed my diet and addressed my GI issues, which seemed to be at the root of my POTS diagnosis. Controlling just the POTS symptoms themselves was only a band-aid approach for me.

I'm all for a holistic approach - I'm really not wanting to load an already upside-down ANS with a bunch of unnatural meds! I actually have an appointment with a functional medicine doctor who has helped a handful of people i know with Lymes and autoimmune things and I'm hopeful he will be able to help or at least recommend next steps for healing the whole issue rather than bandaid-ing the symptoms!

Thank you, all! I would like to get to the root of it all and figure out the why behind it. While the salt/water is helping, it's not 100% and I'm still dizzy and lightheaded a lot of days.The blanket statement of "you have dysautonomia" is as vague as "you have an autoimmune disorder" & I feel like it could be 1,000 different things. 

@bomb3ll3: Paxil rationale is that many patients with dysautonomia go on an SSRI briefly to help calm their ANS ... I actually haven't started it yet because I'm weary of any new drugs, especially brain altering ones... ugh.

@pistol: thank you so much, i appreciate you giving me the insight that dysautonomia itself can shift & change. i'm eager to find the root for this for sure!

@stayathomemom:  Thank you for your feedback, too. I'm just feeling at a loss as to who/what type of doctor I should go to next? Mostly because all of the specialists I've found listed online specialize in POTS, ED, NCS, etc... since I haven't "officially" been DX with anything specific, I don't even know who to go to 😕 Do I just try to find a general automatic specialist and go from there? Not that it's any different than anyone else's story, but I've already been to two cardiologists, an electrophys (the one who finally dx), an OBGYN, an endo, and two GPs (just because the first one completely dismissed me when it all started and tried to write me xanax for "anxiety").