ks42

Propranolol is just a beta blocker alone (no alpha). Have you considered being evaluated for mast cell activation (especially since you have itching)?

So I had posted before about the fact that both my spouse and I have sudden onset POTS (we got it within months of each other), diagnosed via ARS at Mayo, and our doctors are really aggressively looking for some kind of exposure or infection that either set it off, or is still active. So today, we had an appointment with a medical toxicologist at one of the local hospitals. Unfortunately, the one that we were referred to had stopped taking clinical patients, so we had to see his associate. Well, the first thing he asked both of us was if we'd seen a psychiatrist, and had we tried psychotherapy. He kept harping on that throughout the entire appointment. He then gave us the third degree about medications we'd taken years ago (they were in an old record sent over from our PCP) and basically implied we were drug addicts (the old meds in my file were pretty benign - like metoprolol and gabapentin, lol). Eventually, it came out that he'd seen a POTS patient before, and doesn't believe POTS or autonomic dysfunction is really a legitimate illness. And even if it was, he said there was no way it could ever be caused by any type of exposure. But basically, he thinks it's all psychosomatic. He also told us that mold exposure doesn't ever make anyone sick (even if it's black mold); that it's all hype. And he separated us at one point to "see if your stories match up or if you're lying". Made me wonder why they agreed to take our case, since they only see a few patients clinically and are highly selective about which patients they'll take on. Fortunately, we have two neuros, a cardio, a GI, a PCP, and even psychiatrists who do believe we're both ill, who are all really working hard to get us diagnosed and treated. But I wanted to rant about it, because it makes me sad that there are docs out there treating POTS patients like this. For right now, we are waiting for results of more testing done through a new neuro (bloodwork and SFN biopsies). We've also been referred to infectious disease and pulmonology; we're going to wait for these results & appointments, see what they say, and then if we need to will find a new toxicologist later on.

Honestly, though, for me it was the combination of the atenolol and Klonopin that had any kind of effect. I had tried beta blockers without the Klonopin before, and they didn't help; some of them actually made my standing BP spike even higher (beta blockers are kind of a mixed bag with HyperPOTs; they're contraindicated in some cases as they can make it worse). If beta blockers help you a little, but not quite enough, has your doctor mentioned an alpha/beta blocker combo (like labetalol)? Those are used really successfully with HyperPOTS, to my understanding, as some of the BP spikes you get while still on the beta blockers can be offset by blocking the alphas as well. Doesn't work for everyone though, so obviously this would be a discussion to have with your doc. Clonidine is another one that you might ask about - it's specifically for reducing sympathetic output and decreasing standing hypertension and used by a lot of docs that I've seen for HyperPOTS. I haven't tried it as I'm so sensitive to meds they're reluctant to put me on it, but I've heard it gets really good results for some.

The valsalva maneuver is a really complex test to interpret. It requires specialized equipment, as you have to blow into a weighted tube that has a meter to show how much pressure you're exerting, and you have to exert that pressure for a certain length of time (I think at least 10 seconds), at least three or four times. How long you do it and how many times depends on your individual presentation & circumstances. During the maneuver, they monitor your EKG for arrhythmias, your heart rate, and your blood pressure with a continuous BP monitor. All three of those are factored in to determine what the results are, and there are multiple phases to the Valsalva that have to be evaluated separately before it can all be put together. For example, I had an exaggerated BP response late in phase II of the Valsalva, but everything else was normal. So, HR, BP, and EKG all have to be evaluated together to determine what is normal for each phase of the Valsalva under your particular circumstances. Also, medical supervision during such an intense Valsalva like that is really necessary. I wouldn't advise trying to duplicate a test like that at home.

My spouse and I both had our breathing tests done at Mayo, as part of a full battery of autonomic testing. To be considered normal by Mayo standards, heart rate variation during deep breathing is supposed to exceed 12bpm. Mine was considered abnormal, as I only varied by 10bpm, and my spouse's was also abnormal, as it only varied by about 8 or 9bpm. However, my heart rate response during the valsalva were normal, so they said due to that there was no reason to worry about the couple of points that my deep breathing test was off, so they ended up putting it down as "attenuated but normal in light of normal heart rate responses to valsalva maneuver". So how they diagnose and what they consider normal/abnormal really depends not only on your overall symptom picture and presentation, but the results of the other autonomic tests they do as well. Good luck, hope everything goes well with your testing!

I don't know where you live / work (and wouldn't ask you to tell me) but where I live, in most cases, it's actually illegal for companies to monitor and/or tell you what to do with your personal social networking sites UNLESS one or more of the following applies: - You have where you work listed on your fb page - You have clients / customers as friends on your facebook page - You are using facebook during time that they are paying you to work (disability typically should NOT count as paid work time) - You are mentioning work, people you work with, or clients / customers in your posts - You are using a company computer or network - They have a social networking policy in place, and you have violated it If I were in your situation, I wouldn't make a new page. I would delete where I work from my "about me" section, unfriend all clients / customers, and delete all posts in which co-workers, customers/clients, or bosses are tagged. Modify your name slightly from the name you use at work - use a middle name instead of first or last name, maybe use a maiden name, one of your parents' maiden names, etc. If you do those things, depending on where in the world you work, it usually makes it illegal for companies to comment or ask you to change your social networking activity (unless you're doing it during work hours). However, to avoid having to fight them on it (which is a pain), I would also recommend unfriending anyone from your work, and locking down your profile completely. You can set it so only friends can see things; if you make sure "friends of friends" aren't able to see content, then your work people will never see anything you post, even if someone who is friends with you (who is also friends with someone from your work) likes or re-posts your content, or if someone is tagged in your post who is also friends with someone you work with. Also make sure you set your profile so that it doesn't come up in search results, and it shouldn't come up as "people you may know". And finally, make sure you never log into facebook on company computers or networks (even laptops they give you for home use). If it really is important, you can also go through and change the individual privacy settings on old posts too so no one can see them if you're really concerned about it, but unfriending and locking down your profile should take care of that. You can make all of these changes (including changing your name) without creating a new profile. That way, you can still remain in the groups you like and keep all of your old friends.

I have HyperPOTS. I've tried at least 15 medications, but the ones that have worked the best are Klonopin and Gabapentin together - they both work on the same receptors; Klonopin decreases adrenaline levels, and Gabapentin kind of prevents adrenergic storms, which I was having. Unfortunately, the gabapentin eventually caused insomnia, so I had to stop taking it. I just take the Klonopin alone now, which is still effective. I'm also on IV fluids, as I have a hypovolemic component to my HyperPOTS, and that helps keep all the adrenaline in check too. Recently I also tried taking atenolol (only 6mg) with the Klonopin, and it worked amazingly well for awhile - all my symptoms were gone, resting and standing pulse were normal (no POTS) and I could basically go back to my pre-POTS life. However, after awhile, it started lowering my resting pulse into the 40's and below - way too low, which made me feel awful. But, I often have resting bradycardia without the beta blocker though, so that predisposed me to be super sensitive to the atenolol. If your hyperPOTS is caused by mast cell activation, sometimes it can be really helpful to be on a mast cell cocktail (H1 and H2 blockers along with something like Cromolyn). I tried this and it helped some things, but made other things worse. Some people have great success with it though.

I never reacted well to burbur, pinella, or parsley because even if I take these alone without other lyme meds, they cause herxes for me (they all have a little bit of anti-lyme activity and will mobilize heavy metals, so my LLMD explained that some people who are really sensitive do herx from them). Also, they're diuretic, so they're rough on those POTS patients who are hypovolemic. They work great for many people (including other POTS patients I've talked to), just aren't the best option for me. I did do well with the Alka Seltzer gold though. So, my personal favorites are: Chlorophyll - I was on this for a year when I did the Chinese medicine protocol. I had very minimal herx symptoms with that protocol. Liposomal glutathione (good detoxifier without herx or diuretic action) Bentonite clay with psyllium husk powder mixed in (toxin binder) OR charcoal capsules (take these 2 hours away from other meds though) Quercetin (reduces inflammatory cytokines, which many people think are the reason we get herx symptoms to begin with) Vitamin C (1-3g+ per day) - ester-c form. I think my favorite was chlorophyll. That was the only one I needed during my first bout with lyme. Later on, the bentonite + psyllium was probably my best detoxifier with an antibiotic based protocol. I was also on transfer factor both times to help modulate the immune response from herxing, and could tell a huge difference when I was on it. I know there were probably more that I tried at some point, but I can't remember at the moment. I'll update if I remember anything else.

Robstahlobstah - I know I'm hypovolemic because I've had blood volume testing done. One test they can do is a 24 hour urine sodium test. It's not a perfect marker of blood volume status, but it can give a general idea. Mine have always been too low, which points toward hypovolemia. Dramatic response to IV fluids can also be a clue. My POTS symptoms and blood pressure improve so much after 2-3 liters of IV saline, my doctors said that's also a big indicator that hypovolemia is an issue. You can also have a blood volume study done which involves injecting a radioactive tracer to measure blood volume, although not many doctors do this. I believe only some of the major medical centers (like Cleveland Clinic, I think) do this one. But it's pretty specific, and can usually tell you exactly how hypovolemic you are.

Yes! Any symptoms that are caused by the lyme (so, for example, if your POTS was actually caused by lyme) will get worse when you herx. Also, since I last posted on this thread, I wound up seeing a new POTS neuro, who has had quite a few patients who tested positive for Lyme. After treatment, apparently many of them no longer have POTS, although some of them do. I still thought that was really encouraging. So, don't give up hope! When I did treatment, I felt worse, then better, then worse (and so on), for about the first 6 months. I felt worse more than I felt better. After that, the times I felt better started to greatly outweigh the times I felt worse, until I only felt better (I think that happened at about the 1 year mark). It's a slow progression, but if you're having times where you feel better at all, that's encouraging! I know it's discouraging not to be able to exercise, but when I went through treatment, I was told by all my Lyme docs that cardiovascular exercise worsens herxes, worsens Lyme in general, and that I shouldn't be doing it until I was 75% improved at least. I was only allowed gentle stretching and strengthening (like yoga) for the first part of treatment. That was from the ILADS (International Lyme & Associated Disease Society) protocol's exercise guidelines I believe. You may have different guidelines though, based on how sick you were/are and the fact that you have POTS, so I have no idea if these guidelines would apply to you or not. For me, though, avoiding cardio in the beginning was definitely helpful (and necessary).

I can completely understand the salt issue! One of the big things that really has helped my POTS is avoiding processed foods for the most part, so I don't get my salt that way. I am hypovolemic, though, so increasing salt/fluids is actually really important for me. One thing that was important to clarify in the beginning (for me, at least) was that when my doctor said 10g salt, he meant salt, not sodium. There is about 387mg sodium in 1g of salt, so about 3.8g sodium in 10g salt. I was trying to reach 10g sodium in the beginning, which seemed impossible. 3.8g sodium per day was a lot easier! Not sure if that's what your doctor meant in your case though. To get enough salt, I add 1/4 tsp sea salt (500mg sodium) to 16 ounces of water. Add juice or electrolyte mix to help with taste if needed. I also drink 8-16 oz of coconut water per day for the electrolytes & naturally occurring sodium, and I do like drinking broth, so I will sometimes compromise on my "no processed sodium" rule for this, and if I do 8 oz a day of chicken or vegetable broth, that's over 1g of salt right there. Both my doc (who wanted at least half my daily fluids to contain salt) and my nutritionist (who has EDS and POTS himself) really like my salt water & coconut water method, although everyone is different, so I'm sure what's right for me may not necessarily be right for everyone. And because we cook all our meals at home, it's really easy to just salt & season the heck out of everything we eat. We've gotten used to the taste of salty food, and can easily get half of our daily salt intake through food.

You're welcome! I'm not sure if any of those drinks will work as well as gatorade did for you, but I thought I'd throw them out there just in case! I completely understand about the fluids. I can actually function pretty well after an infusion, and my POTS has been so severe that I've spent most of this past year in bed, so getting out of bed and being able to live is amazing!! And personally I agree with you - I don't think getting fluids via temporary IV once a month is a big infection risk, since they're not placing a port or anything. I've heard that some docs swear by IV fluids for POTs patients. I wish these docs would publish more literature on it so the rest of them would be less afraid to prescribe them!

I feel your pain! I've tried at least 15 different meds, at least half of which sent me to the ER with life threatening adverse reactions. I don't retain oral fluids well - gatorade, pedialyte, salt loading, you name it, I've tried it. They work a little, but I still pass such large amounts of extremely dilute urine that my PCP finally came to the conclusion that for whatever reason I can't hold on to oral fluids, and finally allowed me to get regular IVs. That, and the fact that I've showed dehydration / acidosis on my bloodwork before, and I also had a phone consult with an out of state POTS doc who endorsed fluids for me as well. However, I'm only allowed to do 2-3 liters a month in an infusion center, to avoid a PICC or port. If you're doing fluids more often than that, you will need a PICC or port, and there is a risk of life threatening infection and/or blood clots with these. How high the risk is seems to depend on who you're asking, lol, but this is why one of my big-name POTS docs says he will never endorse fluids except on an emergency basis - he says the infection risk is just too high and benefits don't outweigh the risks. I don't necessarily believe that's true for everyone, but that seems to be the opinion of a lot of doctors when it comes to IV fluids and POTS. If you're not able to get IV fluids from a doctor, in the meantime, would it be possible to look into alternatives to gatorade that are non-acidic? I can't handle the acidity of gatorade either - causes ulcers for me too. I'm guessing you've probably already looked, but in case you haven't come across these: Nooma is specifically formulated with something like 30,000 times less acid than gatorade and I think actually has more electrolytes. Although, I think you have to order it online - I've never seen it in a store. My favorite homemade "sports drink" though is about 1/4 tsp celtic sea salt (which naturally contains some electrolytes) in 16 oz water, sometimes with added Elete electrolyte drops. Gerolsteiner mineral water is also amazing - lots of electrolytes, very alkalinizing, and sometimes I'll use half Gerolsteiner / half salt water mixture instead of Elete drops. I also drink coconut water for electrolytes, which is still pretty alkaline. Although, of course, I'd recommend thoroughly doing your research before choosing any of these, just to make sure they're compatible with your health issues.

Fillings require much less numbing than something like an extraction does; it's a lot harder to get a patient numb enough for an extraction, whereas some fillings - especially if they're small - can almost be done without anesthetic entirely. The reason most dental anesthetics contain epinephrine (adrenaline) is because it helps the anesthetic penetrate into the tissues and block the pain sensations of the nerves much more effectively. So for something like a filling you might not notice that you're not getting anesthetic with adrenaline, but for something like an extraction, it might be almost impossible to get you numb enough using a non-epi anesthetic. Some people respond well to the non-epi alternatives no matter what (mepivacaine/carbocaine etc) but it just doesn't work as well for others. Are there dentists that practice sedation dentistry where you are? IV sedation (like propofol) can be done in the office, and isn't general anesthesia, but it puts you into a twilight sleep so you don't feel anything. It's what they typically use for wisdom teeth extractions and procedures like colonoscopies. If that's something you have access to, maybe you could check with your dysautonomia doctor and see if that's something that would be OK with your medical issues? Also, have you considered trying an abdominal binder or a shirt that has abdominal compression built into it? I have the same thing - if I put pressure on my abdomen, sometimes it can dramatically reduce dizziness or help reduce my heart rate. Wearing an abdominal binder or some kind of abdominal compression when that happens can really help (although I'm so sensitive to compression that if I wear it for too long, I get short of breath). Might be worth looking into, though?

It's true that a TTT really is the gold standard for diagnosis. I believe that Stanford might also perform other autonomic testing (don't quote me on this though) such as the valsalva, QSART, and breathing tests. These are really valuable in that they give information on the state of the autonomic nervous system, outside of diagnosing POTS, and can give clues as to what underlying issues there might be, or what medications might work best. I would say this will probably give you a much more thorough look at what's going on. HyperPOTS still requires TTT with full autonomic testing, just like regular POTS. The only difference is that in addition to the tilt, you need a supine/standing catecholamine test (often done separately) to determine whether their catecholamines rise on standing, as by definition, HyperPOTS patients have elevated norepinephrine levels with upright posture. The TTT typically requires you lay flat for at least 30 minutes before doing the tilt. If they are doing other autonomic testing, they'll do that during the 30 minutes that they are lying flat. As far as being tilted, my first cardio tilted me up tiny bits at a time, although Mayo tilted me up pretty fast. By Mayo standards, you only need to remain upright for 10 minutes total. Cardiologists typically like to do up to 45 minutes, so it depends on whose standards they are using. I believe Stanford uses Mayo standards, though. The tilt was actually very easy for me. I failed it, of course, but 10 minutes went by quickly. What really got me was some of the autonomic testing, just because I had some very strange cardiac stuff going on at the time, and it exacerbated that. Couple of thoughts: I was actually able to schedule a "consult only" appointment at Stanford last year, even though I hadn't had autonomic testing - I declined the testing because my cardiologist thought I was too unstable to go through it. I actually wasn't stable enough for full tilt and autonomic testing until a few months after my diagnosis. Would it be possible for you to decline the testing, go in and have the consult, and see what Dr. Jaradeh recommends based on their issues with vertigo and with the petrous cyst? Maybe he'll recommend that you deal with the cyst, then come back for testing, and maybe he'd be able to figure out how to modify the testing due to vertigo issues? Or, could you ask to talk to someone in the testing department, explain all of their issues with vertigo and the cyst, etc, and see if there is any way to modify the testing for them? I was able to talk to either a neurologist or someone in the testing department at two autonomic clinics I contacted, but I don't know about Stanford.

I never sweat with my adrenaline rushes, but we know they are truly adrenaline rushes because I've been lucky enough to have catecholamine levels tested while I was in the middle of them - and my adrenaline level is always super high. My experience with them is much like your daughter's, minus the muscle pain. I definitely have to keep moving, as laying still seems to allow the adrenaline to build up. Slight movement helps dispel the adrenaline a bit, I think. I do get irritable, my heart races, can have chills and get super cold, or sometimes I can have flushing episodes and get super hot, dry, and prickly feeling (still no sweating though). I shake or tremble and have muscle weakness afterward for awhile. If they get really bad, I will also get severely nauseous, and everything will kind of fade into a blur - I'll go into pre-syncope (without actually passing out) until the surge is over. My adrenaline surges started out occurring primarily at night, but now I get them more typically during the day.

Haha, Katybug, that's EXACTLY what it's like! If I get interrupted it's all over, and I just get that blank stare. On the other hand, I also notice I interrupt people more often too without meaning to, because it's like I have to get that thought out before I forget it.

I agree. I wouldn't think MS first either - a lot of things come to mind when I think tingling / numbness in the limbs. You might want to look up peripheral neuropathy and/or small fiber neuropathy. Peripheral neuropathy is tingling / numbness, usually of one or both lower limbs (although it can affect the upper limbs as well), that is really common in diabetes, but can occur with other diseases as well. Actually, there are many diseases / conditions that can cause it, including vascular issues, infections, autoimmune disorders, vitamin deficiencies or excesses (especially the B vitamins, like vitamin B6), toxins/exposures, and so many more! Small fiber neuropathy in particular is, from my understanding, relatively common in POTS I think. Not positive about that, but it's what I've been told. I've had tingling/numbness in both legs since before I developed POTS. I don't have MS, but that was never really a major concern. My neuro suspects it's small fiber neuropathy, even though my QSART was negative for this. I had an EMG with nerve conduction study (NCV) that ruled out major peripheral neuropathy, and my blood glucose levels are always normal so we know it isn't related to that. We're currently considering doing a biopsy to help figure out if it's really small fiber neuropathy. We think my POTS started from a toxin exposure or infection, so it would probably be one of those two things that caused the neuropathy as well. Do you have a neurologist? They're awesome at diagnosing neuropathy

Yes, definitely. When I was first diagnosed, it was worse. I couldn't focus on any one thing for more than a few seconds (felt like I had ADD) and had difficulty forming a coherent sentence. While some of that has gotten better, I still struggle with word finding, and lately it seems like I'm much more indecisive than I used to be. My spouse, who also has POTS, has been hit much harder than even I have in the cognitive arena, with a LOT of problems with word finding, making decisions, and just thinking coherently in general, unfortunately. So together we're kinda funny - neither of us can ever figure out what to do for dinner!

Actually, one of the first questions one of my POTS docs asked me was whether I'd had the gardasil vaccine. She's done some case studies and I think some research on this? At the moment, this article comes to mind: http://drblitshteyn.com/articles/Gardasil_and_POTS.pdf I'll have to check and see if I can find some more information. I think she has more papers than just this one, but I'm not certain of that...

Feeling useful is important to me too. And unfortunately, I'm on disability and committing to anything on a regular basis is almost impossible. However, I've found that doing volunteer work is possible for me - especially on the good days - because I live in an area where there are so many different types of volunteer work to participate in, many of the activities can be done reclined in my wheelchair, and I don't have to commit to anything on a regular basis I also agree with the suggestion that if you're religious, attending services / being part of a congregation can be great as well. Do you have support groups for chronic illness near you? I know there are some Lyme support groups that meet regularly in most major metro areas - you might want to look into that, as I went for awhile when I had Lyme and it was really helpful. Another really amazing thing that I did for myself was get a puppy this past spring. We didn't know how I'd handle the added responsibility, but I do have someone with me who volunteered to care for the dog on days that I couldn't. But, being able to care for a dog has been extremely rewarding and therapeutic. When I'm not feeling well, I have a fluffy puppy usually laying next to me in my chair or at the foot of my bed. I can play with her most days too, as it's pretty easy to throw a ball from my chair And when I feel well enough, I actually can work on training and sometimes even go for short walks. I swear, one day I'm going to get better and we're going to do agility!! She's going to be huge, so we've joked about teaching her to pull my wheelchair around. I have this image of her pulling my wheelchair and all of a sudden taking off after a flock of birds, lol. Hope that helps a little. I had Lyme twice in the past, and know how awful it can make you feel (and of course it's a double whammy combined with dysautonomia), so I feel for you and hope it gets better soon! My Lyme did improve - drastically - once the herxes were over, so I'm hoping the same for you!

fitnesskelly - yes, you're correct, technically Lidocaine is what we use now in the dental industry instead of novocaine, even though most of us still call it novocaine (novocaine's become sort of a general term for "dental anesthetic", lol, even though that's not technically the correct usage). And yes, lidocaine does contain epinephrine. kellygirl - that's the downside of using non-epi based anesthetics for many people. The epi was added to make the anesthetic numb you more effectively. Without the epi, dentists generally have to use a lot more anesthetic to get you numb. And then there are just some people who don't numb as well with non-epi anesthetics, no matter how much is used, especially for the more invasive procedures like root canals and surgeries. I'm sorry it doesn't work as effectively for you - dental pain during procedures is no fun!

I don't have exacerbations from the procedures themselves, the only thing that sometimes bothers me is if I'm having a day with a lot of adrenaline surges, it's hard for me to lay still for so long - I need to fidget. However, keep in mind that the novocaine that dentists prefer to use contains epinephrine, which is pure adrenaline. In normal patients, that can cause tachycardia, shakiness, sweating, etc which can be particularly problematic for some POTS patients. I'm prone to adrenaline surges, high adrenaline levels, and have severe intolerance to any stimulants (caffeine, etc) so I get the novocaine without epi - this is usually carbocaine or mepivicaine. All dentists are able to accommodate this request, as the use of novocaine with epi is contraindicated in many other conditions, so they should have plenty on hand. It's just kind of a pain for them because they have to use more non-epi novocaine to get the same effect as the novocaine with epi.

Anoj - do you mind if I ask how long you've had between your three tilt tests? I had one tilt table test in the spring of 2014, and then full autonomic testing (valsalva, QSART, breathing) with another tilt in the fall of 2014. So two total in the past year and a half. But now, the doc who performed last year's autonomic testing is asking to re-do all autonomic testing (including HUT) even though I don't feel like much has changed. So if I agree to do another one, I'll have had 3 HUTs & two autonomic tests in a 1.5 year time frame....

Debbie Rose - thanks for asking! The repeat labs were completely normal So far, all they can attribute it to is dehydration. We're going to start regular IV fluids (instead of just on an emergency basis) and if I have any more abnormal labs, in spite of the fluids, we're going to have to investigate further (hopefully not!).