ReginaH

1 hour ago, yogini said:

Licorice root and florinef work very similarly.  Did a doctor tell you to be concerned about your pulse pressure?   I've had BPs 90/60 or 100/70 and have been told that is normal, including the pulse pressure.  

My narrowed pulse pressure is what tipped everyone off to my pathology; that my aldosterone levels are low because my angiostensin ii levels are elevated, causing low blood volume. The low blood volume sets off the catecholamines alarm, raising heart rate.

Check out this study from 2018: https://www.researchgate.net/publication/324234951_Angiotensin_II_Type_1_Receptor_Autoantibodies_in_Postural_Tachycardia_Syndrome

You can think of it as a follow up to:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3050076/
 

After this amazing study:
https://www.ahajournals.org/doi/10.1161/01.cir.0000160356.97313.5d

You might be best off reading them in reverse order.

On 4/28/2020 at 7:08 AM, RecipeForDisaster said:

I had a very hard time getting desmopressin - but it makes a much bigger difference for me than fludrocortisone did, and the best part is, I can take it as needed instead of having it built up in my system. The side effects are less with desmopressin, too. If I take too much (I have a script for 0.2mg twice a day, which I’ve never gotten up to) I get headaches and weird feelings, but it helps my BP and gives a nice boost. I wouldn’t call it a life changer, but it’s about 1/3 as effective as a liter of IV fluids. It’s great to have in a pinch.

 

I didn’t have great benefits from fludrocortisone, mostly lots of edema and migraines, but most others seem to do well on it. I do take licorice root in its place, which helps without side effects.

My blood pressure is normally like 106/73, as an example. So, it's not low but it's not high either. My issue is more so narrow pulse pressure.
Does licorice root widen pulse pressure/help with blood volume retention or does it just raise BP?
I ask because I tried midodrine and it just raised my BP but left it narrow, so I'd get readings like 116/94. I wouldn't want to try licorice root and have that happen again.

So, I started doing Saltstick vitassium on top of my 3L of water with liquid IV and other electrolyte tablets and I'm overall doing much better but not perfect.
I would only do Fludrocortisone at this point if it would mean I could intake less water every day. If that's not the case, then I may as well keep doing what I'm doing?

Okay, so the sore throat probably wasn't caused by the Mestinon. I have no idea what that was!

Mestinon seems to help me in quite a few ways, albeit subtly but it also seems to potentially cause issues with my breathing. Is this common? I wonder if it's worth continuing if it increases a feeling of pressure in my lungs, makes me cough, etc?

Fudrocortisone vs Desmopressin?

What have you had a better experience with? Which gave less side effects? Which helped you retain fluids better? Was either a life changer?

It doesn’t feel like any sore throat I’ve ever had before. It’s just at the base of my throat when food begins to enter my esophagus. It’s like this numbness that still signals to my brain that I’m in pain when I swallow and because it was so vague I just kept trying to eat until it was obvious that it was too painful. Really hard to explain...

I finally started trialing mestinon on Wednesday. This will be the first medication I've ever tried for POTS. So far, I think it does help keep my heart rate more steady upon standing and it also seems to make my eyesight less blurry. I'm tiny and sensitive so I'm only taking 15mg 3x a day.

For side effects, it's hard to tell what's POTS and what's mestinon. I still feel really fatigued and sometimes a little "high". I'm slower in general and time tends to feel slower.
I guess I can deal with that if it helps me with orthostatic issues but...

Tonight I tried to eat dinner and my throat both felt numb and irritated at the same time. Swallowing, especially once food got to the base of my throat, began hurting. It got so inflamed that I had to stop eating. Is mestinon causing this? Has anyone had a similar throat issue? I obviously can't continue the medication if this keeps happening because I need to eat...
I couldn't find anywhere on DINET, POTS groups, or the internet that this is a thing.

 

@Sushi

Just realized you wrote about Cardiac rehab as well. Excited to start. Sounds promising!! I hope it's not a long wait. I think there's only one place near me that does it. My neuro is having my cardio write the script to help with insurance and she really wants me to do the actual program because she thinks I should be hooked up, after reading my post-exercise Kardia results.

6 hours ago, Pistol said:

I have a port, so it Is not a problem. I used to get IV fluids only when severely symptomatic but ended up every 6-8 weeks in the ER, often having seizures and syncope. Than I would get them every week and then twice a week. Now that I have a port I can do them at home, a nurse comes once a week to access my port. If I am bad I get them 3 times a week. 

Most physicians are against scheduled infusions, many of them feel that as long as we can drink we do not need them. In my case however drinking did not have the same effect. It kept me well hydrated but had no influence on my BP and HR. --- It took many years for my PCP to agree to the port, since it has risks ( blood clots and infection ). But several physicians refused to give me infusions b/c they did not see the need and I ended up having to be admitted several times a year. Now I have not been in hospital or ER for POTS once!!!

@ReginaH - since your HR and BP fluctuations are mild your doctor might start you on medications which - in addition to the other measures you already take - help many. Infusions are mostly reserved for medication refractory patients. You might be surprised how well medications can help!!! I hope you will find relief - here on this forum we all know how much the symptoms of dysautonomia can rob from your life!! Best wishes!

I just got back from the neurologist. She said that she wants me to do cardiac physical therapy for two months and then to come see her again. If I don't improve, she will put me on mestinon. Unsurprisingly, she didn't really know about the PP thing but said I should discuss with my cardiologist, who I'm talking to on Friday.

14 hours ago, Pistol said:

@ReginaH - I have orthostatic diastolic hypertension - and I am diagnosed with hyperadrenergic POTS.  My BP ( before finding treatment ) went from 90/50 sitting to around 150/ 160 over 100/ 110 standing. In addition to the high BP I would run tachycardia in the 150's at the same time. This often would lead to syncope and even seizures. I was started on many different meds and it took years to find what helped. However - even with the right meds I did not improve significantly until I started scheduled weekly IV fluids. Since I get them ( 1  1/2 years now ) my symptoms and BP and HR have significantly improved and the seizures and syncope rarely happen anymore. 

If you are very symptomatic and conservative treatment does not help I personally would see an autonomic specialist. I could not get proper help from many cardiologists and neurologists until I went to an autonomic specialist and he changed everything. Many MD's might dabble with dysautonomia and really try to help, but since it is such a complicated illness finding the right diagnosis and treatment can be difficult. Personally I would not be satisfied with such a superficial diagnosis as "autonomic nervous system disease".  That really does not mean anything. There are so many dysautonomic syndromes - if you do not know which kind you have then it is difficult to pinpoint the mechanism behind it and therefore difficult to treat. 

On our physician page you can find many physicians that have an interest and understanding of autonomic malfunction. Maybe you can find someone who would be able to determine which type of dysautonomia you have. Best of Luck!!!!

I was trying to avoid IV fluids but this sounds promising. How has this affected your veins over time? Is this in addition to drinking at home with electrolytes or does it replace the need to drink a 1-2 liters every day?

I'd really like to avoid medications if they're not very helpful.

My neurologist so far has been helpful. One of her areas is autonomic dysfunction on her list, which is cool. She's not well known for it though, that I know of, so I may end up also working with other specialists in the future. I'm excited to see her today and share my measured symptoms with her. I might talk to her about injections.

40 minutes ago, toomanyproblems said:

I think about this all the time because mine tends to be too narrow even lying/sitting down. I don't have a reading this minute but my systolic will often drop and my diastolic may go up upon standing. It's more often less than 30 difference no matter what. Recently I was at a rheumatologist appointment and my BP was 100 over 82 sitting. The nurse said good blood pressure or something like that. I said, well, there's not much in the middle. She didn't act like she knew what I was talking about. 

I'm not sure narrow pulse pressure (less than 30 difference between systolic and diastolic) is common. I have noticed some very narrow pulse pressures when I see TTT results on others so it may be a POTS thing. The least I've measured that I can remember was 12 with a BP of 52/40. 

I just basically want to feel less alone because mine is, every single day, in a very low range. I think the lowest I've seen mine is 15 while standing.
I want to hear from others who experience this chronically, so I can find out if the prognosis is still good for me. I want to know if I can still live a long life if I keep getting readings of like 18 and 21 on a daily basis. I also want to see if others haven't thought about this and that if they did the measurements, it might actually be more common than people realize...
The example I gave in the OP was from a morning when I was laying down.

Upon searching the forum, I find it shocking that this term never comes up, except in my introduction thread. Is it just that doctor's generally don't know to look out for this or is it a rarer symptom than I realize?

Can everyone who has a blood pressure monitor, who is reading this thread, take their blood pressure really quick while standing and let me know two things:
1. Your Pulse
2. The sum of subtracting your diastolic from your systolic
3. the % of your diastolic in relation to your systolic

Example:
If your blood pressure reading is 105/70
1. You have a pulse pressure of 35PP
2. You PP is over 34%

I want to see how many people have numbers between 0-25. or 0-25%.
Also, please state if you were sitting or laying down before doing this exercise. Thank you.

 

On 3/1/2020 at 7:26 AM, Pistol said:

@ReginaH - have you had a TTT? ANS disease is often used as a catch-all term if the type of dysfunction has not yet been found. A TTT might expose what type of dysautonomia you have. --

No, a blood transfusion would not help, it might even make your symptoms worse. In some cases of dysautonomia the blood is too thick and our heart has to pump more forcefully. This mechanism can be a reason for low PP. Blood transfusions would not help with that but IV fluids can. They help to "dilute" the blood, making it easier for the heart to pump it through the body because it is "lighter".  

I have not had a TTT. My Neurologist has me doing a version of the poor-man's test every, single morning and the symptoms for me are resoundingly clear:

1. Orthostatic Narrowing of Pulse Pressure (36 (36%) to 15 (15%) upon standing or 102/66 vs 102/87)
2. Orthostatic Diastolic Hypertension (number goes up usually around 20 ex: 66 to 87 upon standing)
3. Orthostatic Tachycardia (This morning: 88 to 117 Upon standing)

The only researcher and physician, now retired that really seems to get my exact symptoms is Dr.Bell, who technically put POTS under CFS/CFIDS/ME. Whether that's accurate or not, he's the only one who really talks about ODH and ONPP in concert and its relationship to hypovolemia.

I just want to get back to my life.

On 2/27/2020 at 12:28 PM, Sushi said:

I would not think that this would be more than a temporary help and doubt that you could find a doctor to do it. Hypovolemia is sort of a marker for Dysautonomia—mine has been verified by an interventional cardiologist. For me, compression knee socks do help a great deal, as well as fluids and electrolytes. If you see an autonomic specialist they would no doubt prescribe mediations that should help—though your ability to do 20 minutes of yoga daily sounds very good!

Hi, Sushii! Yes, basically every morning I can do 20min of moderate yoga! I am finding that the electrolytes and 80-100oz of water are helping with postural tachycardia most days but that my pulse pressure is consistently s***, as well as the raise in diastolic BP upon standing. I have so much trouble finding literature on the subject of this specific combination, especially because I've been hydrating. Today, for example, my BP was 101/83, or 18PP and 18% of the systolic. That's not good...

Hi Everyone,

I'm new to the forum. I'm not sure how active it is in 2020 compared to Facebook but I'm giving it a try, as I'm always looking for more support through this journey. I'm currently unmedicated but I have a daily routine that allows me to sort of function sometimes:
1. 7-8hrs of sleep
2. Moderate Yoga for 20min a day
3. 80-100oz of Water, 32oz of which include Liquid IV

Right now, I'm simply diagnosed with Orthostatic Intolerance. In fact, my chart just says "Tachycardia" and "Autonomic Nervous System Disease or Syndrome".

My biggest concern right now is hypovolemia. No matter how much I drink (with electrolytes,) my pulse pressure has never exceeded 37. In fact, with clear urine and otherwise feeling okay, other than general weakness, my pulse pressure is still only 35. It does help my tachycardia noticeably...most of the time. Often, I've caught my PP being quite low (under 25) even supine. The lowest I've seen is 17, and I've seen it quite a bit. I do also suffer from orthostatic hypertension, although it's mild, where my diastolic upon standing ranges from 81-89. When drinking liquids and electroylytes doesn't raise it to 40, your urine is clear, and you don't want to consume too much excessive salt because of mild orthostatic hypertension, what do you do?

Is a blood transfusion ever a solve?