KiminOrlando

Does she actually lose consciousness? If she keeps standing will she hit the floor? If so, this could also introduce Neurocardiogenic Syncope. If not, that is relevant. 

Just for reference, I'm on 50 MG of Metoprolol ER 1x a day. They don't want to give me too much because it can cause OH. My cardiologist says prescribing that drug to POTS patients is an art, not a science. You want to control the heart rate, but not so much that it drops the BP. Not enough of that drug causes the heart to pump too fast so it doesn't have time to fill with blood, therefore pumping partially empty. Did a cardiologist write your script or is a general practitioner trying to figure this out? 

I think the fludrocortisone is really going to help. Maybe then the beta blocker will be more help.

Yes. I have Gastroparesis. I get gastric dumping as well. When I have very bad episodes, it is like whatever I have ingested is quickly looking for the nearest exit. I end up vomiting until there is nothing but green liquid left. On the flip side, there is nothing but water. My BP drops because it dehydrated me. An episode of gastric dumping can trigger a downward spiral for me.

On 'normal' days, I can hear all kinds of noises coming from my stomach. The pain can range from discomfort to the unimaginable. When the gastric dumping starts, it comes in waves and it almost feels like labor.

I have been lucky enough to find a Gastroenterologist who trained in the UK, and he wrote me a script for Domperidone. It changed my life. This med isn't routinely used in the US. It isn't approved here, but it used to be OTC in the UK. You now need a script, but it is used. My other solution was to decrease the amount of food I put through my system. My stomach feels better empty, so I leave it that way as much as possible. There is an adjustment at first, but after that, it has been great. I only eat once a day now. Since I'm inactive from being sick, I don't need the calories of a normal active adult. I supplement with vitamins. 

17 hours ago, Looking_for_light said:

Anyone have frequent bouts of horrible SEVERE stomach noises and strong movement of air/water(?) all around guts (often with severe hunger!) due to transit issues - gastroparesis or rapid emptying / dumping syndrome? 

Is water incorrectly being drawn into intestine, and poss resulting in hypovolemia (and hypoglycaemia)? 

1 hour ago, MikeO said:

It will get me drunk. But i could use that right now

Well then, you will either stop coughing or pass out. I think Grandma was on to something 🤔 😂

@Looking_for_light

This thread discusses hydration solutions. I remembered reading recipes a while back so I went searching. Hope it helps.

@Looking_for_light

More recipes and info for you to sort through. 

@Looking_for_light

I found this thread with some homemade hydration recipes. 

16 hours ago, MikeO said:

Also heard Paxlovid is contraindicated if taking certain drug? 

My doctor did not give me anything because of this. He said I would have to stop some of my meds. I'm on immunosuppressive drugs, so we just stopped that.

Sorry to hear that you are sick. It took me about 3 weeks to get back to 'normal'. My lungs never got too bad. Mine was mostly upper respiratory although I vomited the first 24 hours. I lost taste for about a week and smell is still not right. My fever went up to 102.4 which caused me to faint without my usual warnings. I drank alot of Liquid IV and chicken broth from bullion cubes (double cubes). Lots of liquids. Nothing made me stop coughing. I got desperate enough to try grandma's approach-- whiskey mixed with peppermint, but I had no peppermint, so I just did a sip of Fireball until I stopped coughing. I don't know what alcohol would do to you, so I'm not recommending it. I was just desperate. My whole body was sore from coughing. The headache went away after 3 days. 

Hang in there.

I just remembered, Midodrine caused headaches in me. Any chance the headaches coincide with midodrine usage? 

The blood sugar thing is wild though. 

Fludrocortisone was difficult for me to obtain initially as well. I am hypovolemic. When I got it and started salt pills, it changed my life in 24 hours. It tanked my potassium though.

Was just coming here to discuss a Mast Cell disorder. Evidently it is a spectrum. Tryptase can be negative and you can still have mast cell issues to a degree. May also want to consider making an appointment with Vanderbilt Cardiology to see if they will refer you to their Autonomic Clinic and maybe their Mast Cell specialist. 

My Mast Cell doctor has me taking 2 OTC Xyzal, Quercetin, and 2 Pepcid AC per day. Also was told that meds can trigger 'leaky' Mast Cells. BETA blockers were one of those meds. 

This case is very complex. In my opinion you need to be at Mayo Rochester, Stanford, Vandy, Cleveland Clinic- some place like that. 

I believe my headaches are Mast Cell related as well. They get better with Mast Cell drugs and don't really get better with some migraine drugs.

Keep advocating for her. She needs you. 

So, I have been chasing migraine relief for some time. Personally, I believe my migraines stem from my Mast Cell issues (lots of anecdotal reasons), but no medical doctors believe that, so we are trying everything else. I used Ubrelvy and it worked somewhat (maybe, I was also on good Mast Cell meds), but I was taking lots of it, so we moved to prevention with Nurtec. That did not work at all. Now my neurologist has switched to giving me a monthly shot. The new med is called Ajovy. Has anyone tried this? I got the shot a week ago. 5 days later I am fainting faster than normal. Something has changed significantly. The only change is this AJOVY drug. I looked it up and it doesn't have fainting as a side effect, but POTSIEs are different. I looked up how it works and found an article that it is a vasodilator. I'm thinking this new migraine med is the cause. Any experience with this?

https://pubmed.ncbi.nlm.nih.gov/24960305/

I was diagnosed with COVID last week. If I was normal, I would be coming out of it now, BUT, well, you all know.

My BP is making 20 point swings in 3 minutes while I am seated. I have no idea what is going on. I go from 124/97 to 103/80. Standing up just drops like a rock. I'm drinking multiple Liquid IVs, cubes of beef bullion, and water daily. Taking salt pills. Sunday I went to the kitchen to get water and fainted. Unfortunately I somehow managed to break my left index finger in the fall. No idea how it happened because I was unconscious. When I woke up, my finger just hurt really bad. So did my hip, but thankfully, it wasn't broken. How long is it going to take to get back to my normal situation? I would consider going up on my FLUDROCORTISONE by half a pill but that bottom number is getting higher than I want. I don't currently have a Dysautonomia/POTS doctor because mine retired. I'm still waiting on a response from Vanderbilt. My primary is not comfortable advising me. 

How did your BP behave in the aftermath of COVID? How long? Did your doctors have you do anything different? Is there any research I can use to take to my current, timid cardio and challenge him to get involved in Dysautonomia? Any advice would be welcome.

Thanks.

Not sure if this topic is allowed here, so remove it if it isn't. 

I was on social media and saw a link which took me to a form that automatically sent an email to my US Senators and Representative stating that I am their constituent, I have POTS, and I am asking that they include specific wording in a specific bill to allocate a specific dollar amount earmarked for POTS research. There was also a link to send to friends and family to send to their Representatives. Is this something that this group has reviewed? Is it something we should cross promote? It was from Dysautonomia International. I'm not going to post the link because I'm pretty sure that isn't allowed. 

***UPDATE*** Evidently they just added an ICD10 diagnostic code for POTS effective 10/1/22. It is supposed to be G90.A. If this is true, having an actual diagnosis code will change things considerably. Also, my email generated an auto-response from my 2 Senators, so they got it. 

SSRIs are intolerable agents for me. They drop my BP so quickly, but everyone is different. 

My cardiologist doubled my fludrocortisone 24 hours before my surgery then for 2 days after. Then I took an extra half pill for 2 days. Then I went back to my normal dose and it seemed to help. I don't know if you take fludrocortisone or if that would be a good solution for you, but it might be worth discussing with your doctor if you take fludrocortisone. 

Ok. I am pulling all of my records for this review. Get this. I have documented that I sent the paperwork from my last Social Security Disability requalify full review on March 13th of this year. I got another review the end of July. That is 4 months later. What is going on? Is nobody else going through this? Is this what they do when they are trying to kick you off? I feel like I am being buried in an impossible amount of paperwork. 

Just got back from the neurologist. He used a vagus nerve stimulator on me called Gammacore. It cost something like $450 and isn't covered by insurance. He wants me to consider purchasing it. It is an electronic stimulator that you use on your neck in front near your jugular vein. Has anyone had any success with vagus nerve stimulation? Honestly, to me it just looked like and felt like more snake oil. I want a solution, but that just doesn't seem like it. I would love some feedback. He also wanted me to buy another nerve stimulator for migraines. Yep, another $450 not covered by insurance. I just spent $500 reordering meds, so I'm just not buying these things.

Frustrated and broke. And slightly annoyed. I don't want to be labeled non-compliant, but I have limits.

https://www.gammacore.com/about/how-gammacore-works/

5 hours ago, DysautonmiaMatt said:

Any new doctor when making the appointment if it has to be in person I tell the office that I have dysautonomia and it can flare up without warning and that I may need to cancel at the last min and request they wave the charge. 

I have walked out of new doctor's offices because I showed up and explained that I was unable to sign the form consenting to be charged for late cancelations because they would not waive it for me. Many times. I waited 4 or 6 months for the appointment, then can't see the doctor because of this. They simply do not care.

My doctors charge me for same day cancelations. 

What was your heart rate at the 10 minute mark? It is my understanding that if your HR regulates itself and your BP normalizes itself by the 10 minute mark, no matter what happens in between, it is considered a normal test. They expect different swings in the beginning. They say everyone does that to different degrees. At least, this is what I remember from my test years ago. Ask for a full copy of your report so you can see your numbers all the way through. It may shed some light on your situation. 

I hope this helps explain. I know it doesn't help your situation. 

1 hour ago, DysautonmiaMatt said:

Tried this and gave me a headache. 

That is what I'm afraid of. I already take migraine meds. I'm holding off starting this until I have a day that I have time to be miserable. 

Ok. I can't stay on this much antihistamine. My doctor switched me to eye drops that are a combo antihistamine and Mast Cell stabilizer called Zatador. Has anyone tried this? It is OTC and was purchased at Walgreens.

What kind of doctor tests for this? I don't get any of these tests.