Sushi

1 hour ago, RecipeForDisaster said:

I would do anything safe to find that answer. 

Have you ever tried strategies to boost the sympathetic nervous system--sorry I don't know your history. Strattera helped me enormously by increasing norepinephrine in the synapses. Only a small percentage benefits from this but they are often overlooked. 

1 hour ago, RecipeForDisaster said:

I never tire of reading about blood volume measurement!

It can also be diagnosed during a heart cath by a clever interventional cardiologist--that is if you are getting a heart cath anyway for other reasons.

I have low blood volume with Neurally Mediated Hypotension (non-POTS) and the low blood volume was verified with testing.

On 5/16/2024 at 1:37 PM, Jyoti said:

My left side is a mess too!  From the top of my head to my toes.  The things that clearly are out of alignment are all on one side.  At least we can know that this is not unusual?  Still...it is curious.  I wonder why bones on the left side of your skull would end up misaligned, @Sushi? 

I asked that—likely from some injury. I did have a few blows to the head early in life.

On 9/19/2022 at 7:41 PM, Ranga said:

I also have symptoms predominantly on the left - starting from my feet and toes, calf, hip, sigmoid colon, neck and sinus. 

My guess is there could be some nerve or circulation issue on that side. 

 

I also have a host of problems that are just on the left side of my body. I am seeing an osteopath who has found misaligned bones in my skull on the left side that may be causing my problems. Fingers crossed!

On 5/12/2024 at 11:03 AM, Jbj said:

I take Metoprolol 25 mg extended release. I actually have a hard time with depression with it but there is not a lot out there. I’m really struggling with this whole thing. I tried to get off but my pulse went crazy and I can’t tolerate a higher dose! Hope you have good luck with yours! 

I have a genetic variation that makes metoprolol unsuitable for me. It is a common one (CYP 2D6) and makes me a poor metabolizer of many drugs. I thus take propranolol instead. Can you ask you doctor I’d you could try other beta blockers or a calcium channel blocker like Diltiazem? 

I’m not sure what the rationale is for starting with extended release. I would think that testing your response with immediate release dosing would make more sense, but of course I am not a doctor. I take 10 mg twice a day and, for me, it doesn’t affect my BP much, but everyone is different. You can take the immediate release tablets every few hours so that you don’t get a treatment gap. Then he could experience with different doses. Then, if propranolol suits you, he could switch you to extended release. 

13 hours ago, bumpkin said:

I had a biopsy done almost a week ago where they used lidocaine as the local anesthetic.. I hadn't been given any anesthetic (local or IV) in several years, last time would've been long before the dysautonomia began, but I never had trouble with 'em in the past. 

Knowing dysautonomia can change these things, before they got started I asked about what anesthetic would be used. When they said they'd just be using lidocaine, that at least sounded better to me than epinephrine, so I wasn't worried about it. 

My nervous system had a really rough time throughout the whole procedure from prep to finish, but I got it over with and came out of it with just the pain from the biopsy itself (the lidocaine wasn't much help) and the trauma from having to force myself to hang tight and ignore the pain and the overwhelming fight-or-flight response for 15-20mins. I didn't have any apparent reactions otherwise and they watched me for a few minutes and sent me on my way. 

Here is the thing: when you get lidocaine as a local anesthetic by default it will contain epinephrine. You have to ask for lidocaine without epinephrine  which they are usually happy to do though it requires a bit higher dosing. I also learned this the hard way but now and careful in requesting lidocaine without epinephrine. They put in epinephrine as it makes the lidocaine last longer and also reduces bruising but I have had major procedures like the surgical placement of a pacemaker with just lidocaine.

7 hours ago, Sarah Tee said:

@Sushi, that is great! I must have missed that episode. Was it in the final series?

I saw it in February so it must’ve been in the final season.

Many of us watch this British TV show that is also broadcast on PBS in the States—a curmudgeon but a brilliant local doctor saves the day with diagnosis and treatment of puzzling cases. The patient was refreshingly male and of course I diagnosed him before the Doc! Doc Martin gets B + though as he explained it simply and immediately gave the fella electrolytes. His prognosis was a bit rosy though. Still, public education on POTS! 

In my experience they are likely to use propofol. I discovered that while it takes me a few days to recover from a higher dose of propofol, I am fine with a low dose and I now ask the anesthesiologist to administer that lowest effective dose for procedures like a colonoscopy where they only need me to be “out” for a short period of time. I also ask that they start IV saline as soon as I arrive.  Best wishes!

5 hours ago, Jyoti said:

That was a big difference!

Yes, really huge effect in daily life as I no longer even think about how long I will need to stand to do things like make a meal or stand in line at a store. Evidently, ablating these ganglia promotes sympathetic function. I wish that more of us could have this treatment but there will need to be a lot more research for it to be available through insurance, as mine was.

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And @Sushi, you do a fair amount of exercise, no?  You ride a bike, right?  How much of that can you manage

I do exercise most every day but with great care. I have learned to “snack” on exercise—5 or 10 minutes at a time and keeping my heart rate fairly low. This way I am able to avoid PEM yet keep some level of muscle strength. For instance a 10 minute bike ride about twice a week, some yoga poses here and there during the day, 3 or 4 minutes of resistance-type strength exercises scattered through the day. Were I to do it all at once, I think that I would get PEM. I do think that the ablation also gave me more stamina as well.

Like a few others, I can be upright all day, though mostly sitting. I only have to lie down if I have seriously pushed past my limits. I do need to wear compression knee socks all day though. The big change for me was having a cardiac ablation for Afib, as they also ablated the autonomic ganglia in the heart as they are a source of Afib. So the Afib ablation was also a cardioneuro ablation and afterwards I could stand up for 45 min to an hour. Before it was 5 - 15 minutes.

On 2/4/2024 at 4:32 PM, Jyoti said:

I use an Apollo Neuro device religiously 

Tell me about that. I have seen the ADs but have been sceptical as so few things actually have a positive effect on sleep for me. How does it work and how expensive is it.

I do the same sort of evening regimen—even a short phone call ruins the possibility of sleep—which has annoyed some of my friends who just can’t comprehend that. Funny though, a bit of texting doesn’t bother me much. Something about talking…

Yes, very telling! I used to work in a hospital and once when they were doing glucose tests on patients I asked them to test me too. I had not eaten for about four hours and my glucose was 40! The nurse immediately sat me down and gave me fruit juice to drink. Though I felt my usual orthostatic intolerance, I had no idea that my glucose had gone so low.

Clonazepam has helped me a great deal over the years—but at low doses, never more than .5 mg. It has helped particularly when I have overdone it and feel like I’m getting into a “danger“ zone. My problem is getting my current doctor to continue my prescription. He does not want to as he is a GP and does not have experience with or interest in Dysautonomia. Clonazepam at low doses, has also helped me with sleep. Each benzo has different qualities and all the Dysautonomia-aware doctors I have been to, preferred clonazepam over others for me. 

You might ask for a 4 or 5 hour glucose tolerance test. They give a measured amount of glucose and check your levels for 4 or 5 hours. It was very telling for me as there an emergency metabolic rescue mechanism that will restore levels after a deep dip so normal glucose tests don’t catch the pattern. Mine went down to 40 during the test. Now I control it with diet, being sure to eat regular protein and complex carbs snacks during the day and sometimes in the middle of the night. I also bought a home glucose meter—easy to use.

Anyone have an update? It looks like they do now ship to the US. Here is a research article: https://www.parasym.co/long-covid.html that looks interesting. It is expensive but more sophisticated than a tens machine and can be used it you have a pacemaker (which I do) whereas a tens machine cannot. They have a 30 day money back guarantee. This is a certified medical device which a lot of research. 

2 hours ago, MomtoGiuliana said:

I'm so sorry.  What has kept me from going to the ER with horrible flare ups is my PCP now understands I need IV saline when in a flare up.  She is aggressive with ordering it and getting me an appointment at infusion center asap.  This has helped so much to tamp down severe symptoms, but it's been years in the making,.  It's frustrating that more doctors at this point are still not aware of our condition and things that can help.

My Dysautonomia specialist also bypassed the ER and set up an arrangement with a hospital infusion clinic to give the specified amount of IV Saline to any patient he referred, and this worked. He had privileges at that hospital. Basically a phone call got you in virtually immediately.

I just had one and they gave me go-lytely, which I think is the more or less the same as Miralax. In the US the protocol that I have had in recent years is to drink 2 L of the prep the night before and two more the next morning. In order to get some sleep, that means scheduling the actual colonoscopy for early afternoon. I don’t think I got dehydrated but it certainly is a difficult procedure to go through – mainly the prep as as soon as I got there I asked for IV fluids and they started them immediately. Then I had a light dose of propofol, woke up and they gave me cranberry juice to drink. I find that eating Jell-O on the prep day makes it easier and also things like chicken broth which give you some balance of electrolytes. I did not feel faint but I did drink a lot of fluids besides the 4 L prep.

On 9/18/2023 at 11:40 PM, Neomorph said:

As @Sushi was explaining, it sounds like they have the help of a physical therapist. I'm guessing based on how picky my insurance has been, I would need an official diagnoses in order to receive this kind of help.

My PT has not used any codes mentioning EDS but rather codes that refer to specific symptoms--so I don't think you absolutely need an EDS diagnosis in order for insurance to pay for PT.

If or when you do need anesthesia, an anesthesiologist I am in touch with says that it is very important to mention EDS, due to the differing response to anesthesia meds, differences in the skin and connective tissue, etc. 

I don’t have any contacts in Australia though I do have cardiac conditions that are related to Dysautonomia—I had atrial fibrillation which has been successfully treated 🤞🏼, though were it left untreated, it could lead down the path to heart failure. I also have EDS (something that can go together with Dysautonomia) and that can predispose you to leaky valves—I had to have my mitral valve repaired). It may not be easy to find a cardiologist who is willing to put Dysautonomia into the equation, though there are some out there who do.  As far as ejection fraction, it is not a hard and fast number, but rather an estimation that will vary between doctors. Good luck with this!

I have hEDS as I’m sure a number of us here do. As @Pistol mentioned, it is not really treatable (at least not by conventional medicine) and there are not many specialists who would be willing to diagnose it. But, if you know that you have hEDS, there are precautions that you can take against exacerbating it. Since it affects connective tissue and heart valves are made of that, with a diagnosis of EDS, it is good to have your valves checked with an echocardiogram.

A physical therapist helps me a lot, giving me exercises to strengthen muscles to support ligaments and also “putting my joints back in place” every few weeks. Also, EDS patients respond differently to anesthesia so it is information that they would need. Good luck with the GI doc, though not all of them will know much about it so it would be good to check with them before making an appointment to find someone knowledgeable.

When I did a TTT in a hospital setting with my autonomic specialist my BP ended up 88/80. I felt really bad at this point and they ended the test. Yes, good to see a cardiologist who is knowledgeable about the autonomic nervous system as soon as you can get an appointment. It is more likely (though not certain) that an Electrophysiologist would know more about this than a general cardiologist.

3 hours ago, GasconAlex said:

Personally I would rather keep the stockings (which look like socks if you wear trousers) and not take another pill!

That is my choice too as knee high compression socks do the job for me and I was not fond of the side-effects of the medication that I took earlier. The socks really don't bother me at all. I choose interesting styles that make me smile.