Introduction (with Symptoms)

[ReginaH]

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?

[Random-Symptom Man]

Hi @ReginaH,

Welcome. I’m sorry you’re having these symptoms. But hopefully you’ll find this forum as helpful as I have. I drink much more fluid than that. 160+ ounces. This amount helps me. I haven’t found that compression socks/pants helped at all. 
 

Temperature regulation is key for me. If so get hot, my PP drops. I take Luke-warm showers sitting down now. I make sure to drink a bunch of water at least 20 min before I shower. If I don’t follow this, I’ll pay for it on most days. 
 

A good night’s sleep and naps also help a ton. 

Small meals also helps. Or at least not big meals. I have to limit sugar. Some sugar is okay. Lots isn’t.

You’ve probably read all this before, so sorry if this doesn’t help. Other people on here are far better at helping than I am. 

Good luck!

[Sushi]

On 2/26/2020 at 10:24 AM, ReginaH said:

Is a blood transfusion ever a solve?

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 medications that should help—though your ability to do 20 minutes of yoga daily sounds very good!

[ReginaH]

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...

[Sushi]

46 minutes ago, ReginaH said:

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...

Low pulse pressure is a problem for many of us. When I did the tilt table test, mine went to 8! I really felt awful and asked them to stop the test. But seeing an autonomic specialist (if possible) can help with symptoms, even though we don't yet know how to address most of the basic causes--or in many cases, what they are. I just completed about 4 1/2 months of very carefully planned cardiac rehab and it also helped my symptoms a great deal. But the program I did was designed for me specifically as a dysautonomia patient. Most will not qualify for insurance to pay for this high tech, monitored program, but you can design it yourself using online resources as several doctors/reseachers have designed programs for POTS patients. The bottom line is SLOW with only really incremental increases in exercise time and resistance. I increased about 1 minute a week, doing two sessions per week. I took too much time to recover to do it more often. I also only used recumbent machines. Took a lot of patience! Now I am continuuing on my own.

[Pistol]

On 2/26/2020 at 9:24 AM, ReginaH said:

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

@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".  

[ReginaH]

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.

[Pistol]

@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!!!!

[ReginaH]

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.

[Pistol]

30 minutes ago, ReginaH said:

I was trying to avoid IV fluids but this sounds promising. How has this affected your veins over time?

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!

[ReginaH]

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.

[ReginaH]

@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.

[Pistol]

@ReginaH cardiac rehab sounds wonderful! That is a very good idea b/c they can adjust your exercises to your HR and BP and see overtime how you improve! I wish you good luck - please keep us posted on how you are doing!

[Sushi]

18 hours ago, ReginaH said:

@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.

Great! Just make sure to educate them about Dysautonomia so they don’t create an inappropriate program for you. I think I detailed the program I did here, but there is more information on a thread in a ME/CFS forum: https://forums.phoenixrising.me/threads/just-finished-an-intelligent-program-of-cardiac-rehab-and-doubled-my-exercise-capacity.79034/

The program helped me immensely—I am able to do much more in daily life and recover much faster. I am also continuing on my own with a reformer Pilates class (done lying down) and recumbent machines at a nearby community gym. I wish you the best!