MattyT

Hello Little Blue Jay, I've been using clonidine for over a year and it is working very well for me. I have no complaints. I use a transdermal patch which is quite handy; it gets changed weekly. It is, by far, the easiest way to deliver meds. I was also able to cut back on other alpha-beta blockers. I would definitely say I'm a success story. MattyT

Hi Jyoti. Yes, I have a lot of thoughts on this and need to ponder your question while I go for a ride on my bike. I've gone through a lot of this on my own and would be happy to share how you might approach this. Stay tuned... Okay... Your symptoms, story and numbers for BP and heart rate sound very similar to mine. I had all the same questions that you have and got a lot of conflicting information. Everything got pointed in the right direction when I visited a neuroendocrine specialist who is affiliated with a large medical institution in Boston. He examined me very thoughtfully and listened to my story. He proceeded to measure supine and upright blood pressure and heart rate. He nailed my problem in less than hour and then confirmed it with supine/upright plasma catecholamines. I encourage you to find a dysautonomia clinic or neuroendocrine specialist as well. The treatment of hyperadrenergic POTS is different than other types of POTS. Importantly, from experience, the wrong treatment can create some very serious complications by making a bad situation worse. Also - I'm a science nerd and have read a lot. I went into the visit describing my symptoms from the perspective that I suspected hyperadrenergic POTS. That made his job a lot easier. The neuroendocrine specialist did the following after listening to my story: After being supine and at rest for 10 minutes, he measured my BP and radial pulse. He also observed the pulse variability. He asked me to stand upright/inactive and observed the same measurements at (roughly) 1 minute, 3 minutes, 5 minutes. He ignored what happened during the first minute. That doesn't count unless you have extreme symptoms. Also, some medications will invalidate this type of functional test. He suspected POTS because my pulse increased and remained elevated. POTS is generally suspected when the upright pulse is 30 BPM over the supine pulse measurement. Then, if the BP measurement is higher when upright, the POTS may be due to excess catecholamines. At this point, he sent me to the lab for supine/upright fractionated plasma catecholamine measurements. My upright norepinephrine level was fairly high which he considered confirmation of hyperadrenergic POTS; no TTT was involved. Conversely, if BP drops when upright (after the 1st minute) it probably isn't hyperadrenergic. It sounds like you had catecholamine levels done before. They are very difficult to measure, sample and interpret. If everything is being done exactly right, a very skilled expert should be interpreting them (not your average clinician). If you attempt any of this on your own, you will need someone to help you take measurements and assure that you are safe from injury due to falling. Excess catecholamines found in hyperadrenergic POTS can cause a lot of other problems with biochemistry, electrolytes, glucose management, etc. Once I started taking the correct meds most of my biochemistry normalized. It was magical. I hope this helps.

Hi Neomorph, Based on what you wrote, I agree with what Piston said. You need to see a rheumatologist. Don't get discouraged. Ask your primary provider to refer you to a rheumatologist; be direct, persistent and polite. My own personal experience with a rheumatologist made a huge difference in my diagnosis; of all my providers, he is a superhero.

I would agree with many of the comments made above. For me, hydration with salted/flavored water would be important. Resting horizontally would be equally important. I have found cardiac rate/rhythm plug-ins on my mobile phone to be quite helpful. The tracings from these devices can be very informative for your doctor-cardiologist-electrophysiologist-neuroendocrinologist.

Hello Little Blue Jay, I would answer, "Yes and No". I find your question quite interesting. I'm encouraged by the fact that you are able to manage physical work and that you are fairly active. I've had similar experiences when I'm unable to tolerate loud noises and noise actually triggers tachycardia and agitation when I'm trying really hard to be calm and relaxed. I know the feeling. However, I would say that, in my experience, I'm already close to the edge and the loud noise is merely tipping the balance and pushing me to realize that I'm closer to the edge than I realized. I have hyperadrenergic POTS. I look at this as a symptom and not the fundamental cause. However, the hyperadrenergic part of this condition causes a lot of other problems. I would rather hike up to the top of a small mountain than stand at a Remembrance Day parade. For me, standing quietly at attention is quite taxing physically from a cardiovascular perspective. The sound of cannons would be very deeply emotional for me and could trigger a lot of agitation and tachycardia. I sometimes find that when the "flare" is happening, I need to put more effort into calming activities like rest, relaxation, hydration. I try to embrace these episodes and know that it will eventually pass and that when the flare isn't happening I will be at the top of that small mountain with a great big smile. My greatest challenge is realizing when those flares are going to happen; understanding what might cause them; how to manage them. MattyT

Yes, for sure the unpredictable nature of dysautonomia is something that I struggle with a lot. I look at it in two ways: 1) I know there are things which I should avoid; that includes excessive heat, dehydration, loss of sleep/fatigue. I notice this especially when I change time zones to visit family and there's a +6 hour time change and loss of a night's sleep. The good news is that these are things which you can learn to control and plan for and try to minimize. Never push beyond your limits. 2) The second aspect is that there are always days when you try to do everything right and it still takes you down. Just like you said, it is unpredictable. I too ruminate over these times and try to sort it out. I think that's the right way to approach it. Accept that there will be some bad days and try to find the things that trigger them. There's no magical formula for me but I am getting better at managing and preventing symptoms.

Hi Albert, Yes, me too. I have hyperadrenergic POTS and I believe this, at least in my case, is caused by excess catecholamines. In my case that is markedly elevated nor-epinephrine and confirmed by laboratory testing. It is interesting that you call it coat-hanger pain - that's a great description for it which is new to me. I've also had some serious jaw pain and recently had to start orthodontic braces for the second time. I think this is all related. I never really noticed how tense my neck and shoulder muscles were until I started getting massages. There were frequent comments that my neck and shoulder muscles were seriously tight. This probably contributed to headaches too. It appears that I had grown accustomed to the neck/shoulder tension and just pushed through it. You deserve credit for recognizing it! I find that it is uber-difficult to be objective about self-observations and often much easier to see these things in other people. I have found drugs which help: 1) carvedilol, an alpha & beta blocker; 2) clonidine, an alpha blocker helps quite a lot. These meds were prescribed by a neuroendocrinologist who I trust and they have helped me. They also help with some of the tachycardia and palpitations. Feel free to reach out if any questions, MattyT

Hi Abe, Yes, I've been using clonidine as a patch for almost a year and it seems to be working great. I too have erratic hypertension and clonidine seems to help a lot. I also take other anti-hypertensives. I totally understand the hesitancy to begin taking this medication. It took me almost two years to finally decide because nothing else seemed to be helping control my blood pressure. The side effects include dry eyes and mouth which can be offset with pyridostigmine (which I also take).

Hello, I received the new Covid vaccine and the influenza vaccine, at the same time, in Sep-2023 with no issues. However, in the past I have had problems after influenza vaccines and Covid vaccines which tend to linger for a few months but are never severe. PPD/TB-test has never been an issue for me and I've been tested often because of my occupation. I've also received Shingrix twice with no issues. Hepatitis vaccines and DPT have never been an issue. The concerns with influenza vaccination is legitimate. However, I would rather deal with the fallout from the vaccine than risking serious complications of influenza infection. I might skip a year every so often, but never skip more than one year. Matt

Hi Rupey, The medication that seems to work well is clonidine (an alpha blocker). Also, I've used carvedilol with pretty good success (a beta blocker with some alpha blocking). I'm still trying to find the right dose/balance of the two. I have laboratory evidence of very high norepinephrine levels, so it makes sense that these meds should work in my case. You mentioned that beta blockers made it worse. Yes, indeed I have experienced that with other alpha blockers. They sometimes have a sort of "rebound" effect and effectively make a bad situation worse. In my experience, doxazosin (an alpha blocker) solved the blood pressure problem but made the tachycardia worse. Your description of your symptoms reminded me of what I experienced while trying to fall to sleep while my heart is racing and pounding. I tend to be pretty chilled out but a heartbeat pounding in my chest is really annoying when I'm trying to sleep. Also, you mentioned SSRIs. My experience was similar with both SSRIs and SNRIs. In retrospect, this is a known issue in the literature for some people with high norepinephrine levels. Additionally, I've found that any amount of alcohol is problematic especially for sleep. That means, none, not even one small glass of wine for me.

Yes, I have this problem often. As Nelson indicated, I think that brain fog is my biggest problem. It can slow down hearing and understanding of others; make it hard to find the right word and make it difficult to follow a conversation. People who know you well will easily recognize that you are not feeling well. I also know that my speech is sometimes limited by poor hearing which makes me susceptible to misunderstanding of some sounds. I sometimes hear the wrong words which makes me try to lip read (and I'm not good at that at all). My hearing problems are probably related to profound tinnitus. Hearing aids help a lot but they aren't perfect. Also, hoarseness of voice is a problem that impedes my ability to project my voice. My real voice is deep and articulate; my hoarse voice sounds pretty awful. So yeah, it is a complex and annoying problem for me.

Yes, for sure! It feels exactly like when my mobile phone is in my pocket and buzzing. Except...my phone is not in my pocket. I have hyperadrenergic POTS and I attribute this buzzing to the excess catecholamines overstimulating nerves/muscles. I feel the buzzing only occasionally; sometimes it persists on/off for days and then goes away. It seems to coincide with twitches, muscle spasms and muscle cramps, but not always. It is really annoying but you can find a way to ignore it. Good luck trying to explain this to your doctor! But, I believe it is part of the picture...it is not a main feature of the story but it is part of it.

Steveno, Wow! That's an amazing story and I can imagine it does have a very dramatic impact on your lives. Some thoughts and ideas that came to my mind as I read this: First, I wonder if they did a Holter monitoring on your dad? I agree with Pistol's suggestion that most cardiologists will use it. Also, I know from personal experience, that Holters can be fairly short for only a few days. Alternatively, they can be fairly long duration and stuck on your chest for up to a month or longer. If the first one was "normal" and they can't explain the fainting episodes, it seems very reasonable to ask that it be done again for a long time interval. I know from personal experience that my first Holter was "normal". My second Holter lasted for a month and was not even close to normal. It explained a lot of what was going on and eventually was critical to my care by an electrophysiologist. You could seek additional insight from a cardiologist who specializes in electrophysiology. It also seems reasonable to ask for a second opinion of another cardiologist or a neuroendocrinologist. Tilt table tests (TTT) can be very helpful sometimes. However, they will not always reveal the underlying issue and may not be necessary to make a diagnosis. My neuroendocrinologist said that we don't need to do one to make a diagnosis in my case. If cardiologists and neuroendocrinologists don't find anything, a good neurologist might help. I agree with your thoughts on that. This takes time and lots of patience. Because of COVID, there are many people who need help from these specialists. With that in mind, you can set up appointments with multiple specialists and ask to be put on their waiting list in case of cancellations. Then cancel the appointments that you don't need. I sometimes get appointments on short notice with busy specialists because I asked to be put on the cancellation list. This is a huge challenge for your family. Hang in there.

Hello GardenGal, My thoughts - First, your son is a lucky guy to have a mom who is so well informed. You seem to be on the right track. The fact that he has a diagnosis as a teen is a wonderful reflection on you. My experience: I have hypermobility syndrome and recently confirmed hyperadrenergic POTS. These two conditions tend to travel together. It took me years to get a definitive diagnosis and I had symptoms of this for decades. I've lived a long and mostly healthy life with a rewarding career and I'm now well beyond retirement. I also have five wonderful healthy grandkids who bring me immense joy. I also have some near misses in my health history, so I feel sorta lucky overall. I tend to have a lot of problems with hypovolemia which is a common problem with some forms of POTS. Hoarseness of voice and constipation are things that I live with and manage. In my case it is caused by elevated norepinephrine levels which may lead to complex digestive issues. I also have moderate diverticulosis which means that I must work diligently to avoid constipation. Diverticulosis has repeatedly been documented on routine screening colonoscopies (which were done because I hit the magic age for screening). I often have mild abdominal pain. I also have a tendency toward soft tissue injuries including tendon ruptures everywhere. This also includes a tendency toward rib fractures which are, at first, frightening. Eventually I learned to deal with this. The most recent rib fracture was in a yoga class while doing a supine twist. It really wasn't a big deal and I finished the class without skipping a beat. I have also torn and over-stretched abdominal muscles/connective tissue which is pretty common in hypermobility; this can cause pretty significant discomfort and will limit my activity until it heals. I still work to find the perfect combination of medications. I'm delighted to report that I am recently very, very fond of clonidine + mestinon. I feel wonderful and I smile a lot more often. As a kid I was hopeless at any sport which required coordination. That was pretty discouraging for me. As a young adult, I found my groove with kids, family, advanced yoga, long distance cycling. I was recruited several times into amateur team triathlons as the cyclist (and won too). As a senior, I'm riding my spin bike almost every day and usually manage to finish in the middle of a pack of 30 year old riders. I surprise all my doctors...including the cardiologist. GardenGal, you are doing all the right stuff. You will find the answers. I hope this helps and let me know if you have any questions.

Hey Rupey - I’ve had similar symptoms for a long time. As your were posting this, I was also experiencing a heart pulse which was pounding in my head, fingertips, chest, everywhere. I’ve had the problem for years. I noticed it mostly at night when trying to sleep. Recently, in Dec 2022, it got worse because of a medication which probably should not have been used. My primary provider prescribed the medication hoping that it would address a blood pressure problem; the drug actually made a bad situation worse. Once I stopped the drug and switched to a medication which was recommended by a specialist, the problem resolved. The good news - I think I finally have an answer and the right medication. The bad news - these problems can be difficult to diagnose and treat. In my case it took years. You have had a lot of important screening completed; it seems like your care provider is thoughtfully and methodically looking at the most important concerns first. You should take comfort in that. Be reassured by that. Also, importantly, you seem to be young, fit, aware, and keen to get to the bottom of this concern. You are motivated and using that to find answers to a legitimate concern. You will eventually find answer.