HangingByAThread

Margaret, have you seen any specialists besides the neurologist? (Like an endocrinologist or dysautonomia specialist?)

Hi Emma, I meant to reach out to you earlier. I’m on a low dose…..62.5 mg. My doctor prescribes the lowest pill they make, which is 250 mg and I cut into quarters and take one quarter each day. Initially, he wanted me to start on 1/4 pill (62.5 mg) and work my way up to 1/2 pill (125 mg) after a week or two but I tried but just couldn’t tolerate the higher dose so I was instructed to stay on the 62.5 (I have low blood pressure most of the time). I also was instructed to only take it in the morning since I have extreme bradycardia when I sleep (heart rate in the low 20s). I feel so much better on them because they really calm down the tachycardia and the adrenaline rushes. I no longer feel like a nervous wreck who jumps out of their seat when someone drops something or the doorbell rings or a car honks but they haven’t taken away things like the little palpitations, PACs and PVCs. I still have them but they aren't as extreme (they are softer and not felt as really hard thumps). I also feel like the calmness they give me is a natural calm (or just a complete absence of the nervousness), not like I’m drugged up on something. I have to take a huge amount of salt and wear my compression hose all the time or else my ankles and feet swell up but the relief I get it more than worth it. Another good thing I noticed about the Methyldopa is that before I was on them, when I’d walk or stand on line my blood pressure would go very high and I’d sweat like crazy (to the point of having to remove my coat outside in the winter). I would have to stop walking and lean against a building and wait for the heart rate to lower, pant and mouth-breathe all the time, etc. I’m no longer like that since taking the Methyldopa - my heart rate doesn't spike as much. I feel like my nervous system no longer goes haywire with all this extra “traffic”. Honestly, I don’t know what I’d do if they ever took it off the market, I don’t think I could function anymore. I’m wondering if maybe you just have to wait a bit until your body adjusts to the meds? In any event, I’m curious to hear how you are doing on them now? Do you feel any better?

I don’t have diabetes but rather I am hypoglycemic (specifically “reactive hypoglycemia”) so I don’t know if any of my experience will help you at all but here goes…. When I was first diagnosed I cut back a lot on the carbs and sugar and felt miserable. Not because the diet was hard to stick to, but because it made my body just feel horrible. I slowly started to reintroduce a small amount of carbs/sugar and feel much better. I eat small meals but snack all day (I consume food about every 2 hours and eat early up until I go to bed). I just eat smaller portions of carbs and have protein alongside them. If I’m going to eat simple carbs (like pasta) I just have a spoonful or two and that’s it (and I eat a lot of protein with it – for instance I make a really chunky meat sauce, have a lot of cheese, and have a lot of vegetables on the side). I also never consume soda or juice or anything else that will instantly make my blood sugar spike and then plummet. On a typical day I will have my buckwheat flake cereal (yes, I know, sounds glamorous doesn’t it?) then an hour later a bacon, egg and cheese sandwich. Then when I feel like I’m crashing a bit I have some mock-peanut butter cups (dark chocolate with sunflower seed butter inside – 4 grams of protein, 17 grams of carbs and 12 grams of sugar). It seems to satisfy my cravings for junk and wakes me up a bit (I can’t really have caffeine – even decaf makes me shake). Then I can go with just having a cheese stick a little while later but I find I need a little bit of carbs at lunch (with protein, of course) and then near the end of the day when I’m in that slump I have another small serving of carbs. If I want to have dessert I wait until my dinner is digested and I’m back in the low sugar slump and then have a small portion, followed by high protein and a tiny bit of carbs before bed. It sounds like a lot but I seemed to have worked out how to keep my sugar levels on an even keel. I also don’t really eat junk food or things with a lot of chemicals and cook a lot of my own (simple) food - not because I’m a martyr or want to, but out of necessity (I have a lot of major food allergies).

I'm pretty much a creature of habit - doing the same thing usually keeps me from feeling awful. Yesterday I woke at my usual 5:55 but stayed in bed until 6:40 because I felt like I was in a coma (I justified the late start time because I just washed my hair the day before and it didn't look or smell that bad so I could skip and stay in bed longer). Then I took my thyroid meds and woke my kids. I popped 2 salt tablets and took a shower (but the water kept going too hot and then too cold so I was getting paranoid that I would start getting symptomatic) so I made it a quick shower and put on my compression stocking ASAP. I took my blood pressure and ate a bowl of my gluten-free buckwheat flakes (with lots of salt on top) and then popped yet another salt tablet and then 1/4 Methyldopa tablet. We were running late to get my younger one to school so I yelled at her to run ahead and catch the bus for me (which she did) so we wouldn't have to make the dreaded 10 minute walk to her school (she got off the bus herself so that I wouldn't have to wait around 15 minutes for the next bus. I then transferred from the bus to the subway and prayed that a train would come right away and that I'd get a seat. I only had to stand waiting for 3 minutes so it was a win-win situation. I made my way down to the first few cars to try to beat the others for a seat. It got pretty hot on the train so I had to peel off my jacket and drink 1/2 bottle of water but I made it to my stop ok. I made the 4 minute walk to my job ok, stopped by McDonalds and picked up my daily bacon egg and cheese (more salt) and ate that at my desk. I started work at 9:00 (sat most of the day with multiple trips to copier/bathroom/kitchen/bathroom/bathroom and bathroom I drank about 6 bottles of water in total throughout the day and ate about every 2 hours to keep my blood sugar in check (cheese sticks, ham sandwich, yogurt, chips and guac followed by another couple of salt tablets). I usually work until 5:00 with my husband picking me up (I don't do well after being at work all day) but I left at 3:00 since it was Halloween and I wanted to help the kids dress and get dinner made early. I had a mini-freak out in the car home because I forgot to bring a bottle of water with me and we were stuck in traffic. I was ok though. Husband dropped me at home and he went to pick up my daughter at after school (because I couldn't possibly do that being at work all day). I made some quick homemade meatballs and pasta and sat on the couch. I made sure to walk to the door slowly when the kids came knocking for candy. I didn't go with my own kids because that would mean me climbing up and down hot stairs (kids hog up the elevators in our development). My kids and their friends came back to the apartment but my husband hadn't come back from his meeting so I got a little panicky that I'd have to walk one of the friends home and at 9:00 I really am not doing well (my feet are big swollen balloons by then). I had to bite the bullet, chugged down some water and had to speed walk the 15 minutes each way to get her home (anything slower and I wouldn't have made it). My legs were starting to get uncoordinated like jelly and I didn't think I could make it so I walked faster and faster, kept yelling at the kids "hurry up". I returned home in a big sweat and headed to bed so I could put my swollen feet up. Then I just watched tv and fell asleep (followed by more snacks and another salt tablet, of course). It was a really good day for me!

Not lying on my back helps me (I can only sleep lying on my right side now, which has really become a pain because I wake up due to my hands/arm falling asleep). Also, I follow Cleveland Clinic's protocol of elevating the bed so that I’m not flat (it stopped the vibrations as well as the muscle spasms and leg jerks that I’d get while lying supine) but it has to be the top of the bed raised so that my whole body is on an incline – pillows aren’t enough. Now I can sit in bed and watch TV without vibrating! However, every once in a while I wake up vibrating very slightly first thing in the morning (often if I've rolled over onto my back) but once I’m out of bed, I’m fine. Vepa, those hypnosis videos sound interesting. Is there any one in particular you could recommend?

Methyldopa helps me.

I'm premenopausal but my hormone levels have always been fine when they were checked. However, before my period my POTS symptoms go totally off the charts. I also have low vitamin D and was told to supplement that by my endocrinologist as well as B-complex. I hate the smell of the B-complex but notice a difference when I don't take it.

Hi dizzyape, I was the person praising this drug! I’ve been on it for 14 months now. 14 months of hardly any adrenaline surges (I was diagnosed as Hyper). Sometimes I do feel the surges but instead of being extreme and causing me to shake/sweat and not be able to go to sleep, they are minor occurrences - even if it didn't help the tachycardia I think I'd stay on this just for how much calmer it makes me feel. I was also prescribed this by Dr. Muldowney. He wanted me to start with 1/4 a pill and then work my up to 1/2 a pill but I cannot due to my low blood pressure so I’m sure I don’t get the full effect of what the meds could do if I could tolerate a higher dose. I take 1/4 pill every morning after I salt up like crazy, drink a ton of water and put on my support pantyhose. Like you, I was also diagnosed with inappropriate sinus tachycardia and orthostatic intolerance. Despite my low blood pressure (sometimes 90/50 if I don’t salt up), when I stand up right for a while my blood pressure can go up to 140+/90 and even higher – that was making me sweat and huff and puff and feel faint and light-headed. I notice that the Methyldopa has not only “blunted” the signals from my nervous system telling my heart to race, but it also helps my blood pressure not go so high when I’m standing upright. The first improvement I noticed was that I could stand and finish drying my hair in the morning. I was a little afraid to try the medication at first (I can't really tolerate anything at all other than Tylenol) and because I have heart block - but I was put on a monitor just to make sure. I’m not sure if other people take the Methyldopa more than once a day but I was told only to take in the morning because I have heart rates that dip down into the low 20bmp when I sleep. It is also a pretty old (and inexpensive) medication and doesn’t have as many side effects as the other 2 drugs the doctor mentioned trying if this didn't work so I’m happy about that. I do have to add that I’m not 100% and I still get tachycardia here and there but I can honestly say that being on this changed my life. I’m curious to know what dose was suggested for you and how often you were told to take it. Also, I want to add that this definitely didn't cause any additional tachycardia for me. Good luck and let us know how this works for you. I'll keep my fingers crossed for you!

Welcome Paige_B Yes, I've had normal echos (all 15-20 of them were normal other than a bit of mitral valve prolapse that sometimes shows and sometimes doesn't) despite having what feels like every cardiac electrical issue there is. You can have a healthy heart with Dysautonomia (no enlargement, scaring, etc.) it's the signals from your nervous system that get all screwed up and that isn't visible on an echo.

In my experience Methyldopa!!! Absolute miracle drug for me (I have really low blood pressureIt so I take 1/4 pill and salt like crazy). It alleviates the dysautonomia and especially blunts the adrenaline rushes. Nobody mentioned this so I was surprised to find out that it alleviated about 98 percent of my migraines. When I get them now they aren't such a big deal and I don't feel like my head is going to explode.

I've had 3 TTTs. Only the first one was horrible (started to cry during it from the tachycardia and was bedridden the rest of the day). The other 2 were progressively better but I think that was because I was on my way to figuring out what I had and was starting to load up on salt and water. Good luck to you. I had a great experience at Vanderbilt. They really helped me the most.

I haven't any suggestions for during the day but have you tried to elevate the head of your bed. Once I did this I stopped waking up each night to pee. According to Cleveland Clunic: Raise the head of your bed by 6-10 inches. The entire bed must be at an angle. Raising only the head portion of the bed at waist level or using pillows will not be effective. Raising the head of the bed will cut urine formation overnight, allowing for more volume in the circulation in the morning. You may use cinder blocks or bed raising kits. I bought some heavy duty metal risers from Amazon and they're great!

I have had microscopic haematuria for years now. At one point my ob/gyn got a little concerned and sent me to a urologist to rule out bladder cancer. I had all the invasive testing as well as MRIs with contrast dye but everything was negative. I almost never get bladder infections so we were never able to figure out the cause of this but, interestingly enough, my mother and her mother have always had the same issue of blood in the urine (neither of their doctors could find a cause of it and neither of them developed any complications from it).

Yes, I have almost all those symptoms and a long list of others as well. I went to Vanderbilt a little over a year ago. The dysautonomia specialist and neurologist were fantastic. The neurologist performed a lot of blood work. I’m go glad I went and my life has really improved since (but it has been a struggle and a lot of rollercoaster ups and downs). I will never feel normal but I can do so much more now and feel less uncomfortable (specifically, they really helped with stopping the adrenaline rushes). I wish you luck with your appointment and I hope that you have a good outcome!

Yes, I also have issues with moving vehicles. Normal driving is ok but when we have to take a sharp turn or maybe the driver makes a very fast U-turn I have issues. I feel like I'm on an amusement park ride and even though the car has finished making the sharp turn, it is like my body gets confused and it still feels like we're taking that turn and I get really dizzy for a minute or two. Sudden stops or people cutting us off makes my heart race and I sweat bullets. Otherwise, I can tolerate riding in a car just fine but I do close my eyes and hold on a lot and it drive my husband nuts!

I’ve taken Symbicort, Albuterol (Proventil and Ventolin) as well as Xopenex but, unfortunately, all of these medications make me feel a thousand times worse. The Albuterol gives me tachycardia, major insomnia and makes me shake uncontrollably (so much so that people stare at me). I've even tried taking them through a metered dose inhaler and then rinsing out my mouth afterwards but I still shake like crazy. I have asthma but don’t take anything unless I’m really in a bad way. Two years ago I saw a new doctor who told me that she developed POTS when going to medical school. She then recommended Xopenex because it is an emergency inhaler like Albuterol but doesn’t have such bad side effects (less tachycardia). I’ve tried it and while it doesn’t make me as symptomatic, I found it didn’t work quite as well as Albuterol so I take the Xopenex when I’m too scared to take Albuterol but if I’m having a major emergency I take the Albuterol (most times I just take a vial of prescription saline in a nebulizer). As for the Symbicort, I took it once and it gave me a horrible burning sensation in my lungs and gave me really bad hives (my allergist told me to stop it immediately). I normally don’t get hives unless I’m having a very bad adrenaline rush or major food allergies. I remember learning that Symbicort is a mast cell stabilizer, which sort of surprises me because I’ve always felt that with my gazillion allergies I might also have a mast cell disorder but I’ve tested negative so I’m really perplexed. (I'm hyperadrenergic.)

I’m a bit squeamish about needles but I get the shot religiously every year. I might have skipped a year or two but then I got the Swine Flu one summer and it went into pneumonia for 3 weeks. I was so bad that (104 fevers) that I don’t remember much of that time. Every year I get a bit nervous about getting the shot but I do it and I’ve never had an issue. I have a lot of allergies so I make sure I get a latex-free one. They also have some that are preservative free. I take the shot because when I run fevers or have viral infections I get crazy arrhythmias.

I cannot tolerate beta blockers so I take Methyldopa, prescribed by Vanderbilt. I swear by it.

I’m ok with the computer screen at my job all day (but I have an anti-glare screen on it and have the brightness turned waaaay down because I can’t stand bright light). I find what bothers me more is watching videos on the cell phone or some tv shows. Old movies seem to be totally ok (thank you Turner Classic Movies!) but sometimes I will watch a documentary – like a crime show and there will be a photo of someone the camera is fixed on and then the camera pans out very slowly and I will get really dizzy so I have to look away for a few seconds and then I’m fine. Shows with things like moving vehicles are not a problem but the camera panning in and out gets to me and I get instantly dizzy. Nothing feels as embarrassing as me lying on the bed watching tv and actually feeling like I am going to fall off! 3D movies aren’t always the best thing either and if the camera is a bit shaky then I feel horrible. A few years back my kids made me take them to the movies. It was a movie for pre-teens shot to look like one of the kids narrating/staring in it was filming it with his ipad and the camera wasn’t steady. I didn’t make the connection right away but I started to get very nauseated and dizzy and so did my pre-teen (who thought she was going to throw up so we thought she was sick or ate too much popcorn). We all had to leave and my husband had to bring the car around because I was actually unable to walk right (I felt like I was drunk and couldn’t stand up) and then my daughter and I had to lie on the bed for a couple of hours until the feeling passed – it was horrible! I can’t remember the name of the film now but afterwards my husband found an article that told of many people walking out of theaters and given their money back because it made a lot of folks dizzy and sick.

Congratulations! This is awesome (and the cake looks good too). It is funny but your cake reminds me that I first discovered that my meds were helping because I was able to make more varied food for my family (less Domino’s and Chinese takeout) and then I took out baking gadgets that hadn’t seen the light of day in years. Doesn’t the brain fog really frustrate you? I “cheat” now and have one of my kids read me the instructions and help bake and when I get to the point where I can’t remember what to do next, she’ll tell me. When I’m baking by myself I find that it helps to take out all the ingredients and put them on the table. Then as I add them to whatever I’m making, I quickly put away each item. Then I don’t have to ask myself “did I put in the baking soda?” or wind up doing something stupid like putting in the salt twice. I still have to read things over again and again though. Sometimes I wish I could stay home from work and just cook. It does wear me out and can be totally exhausting but I notice that if I spend hours in the kitchen I don’t feel that bad overall because I think I wind up doing the perfect combination of sitting a bit, standing up, taking a few steps, sitting down again. I think it gets the blood flowing just right for me – cutting apples, loading the dishwasher, chopping something – everything sort of in moderation and not too long doing one thing – and if I get overheated, I reach into the freezer and toss an ice pack around my shoulders. Also, if I’m reading the recipe over again and again I don’t have time to dwell on my issues!

I know, tell me about it. My insurance will gladly pay for countless ER visits but refused all tilt table tests saying they were "medically unnecessary" (I still had them). I live in an area with the best hospitals but nobody here specializes in POTS or related issues. My internist looks terrified of me and suggests that I travel 3 hours when I need care. I think I make her nervous and feel like she doesn't want to see me anymore so I just don't go to the doctor. I don't mind traveling long distance to Cleveland, Vanderbilt, etc. for testing but those doctors don't take you on as a patient, they just give a diagnosis and suggestions and then help out the next poor soul. My neurologist said she wished she could help me and a local geneticist sort of made me feel crazy for even coming in and refused to do any testing. However, on the positive side I have my wonderful EP but at this point all he can do is hold my hand and check my EKGs when I've been hospitalized (he reassures me that my heart is sound and that really helps but there's nothing he can correct). A rheumatologist found nothing wrong with me but he took me seriously and said I definitely had POTS and referred me to a great doctor at Johns Hopkins to rule out Sjogren's. That doctor was wonderful and suspects EDS so I'm hoping I will have some answers really soon. However, I'd give my right arm to find a doctor I could see when I have issues. For instance, I am now getting weird spasms in my legs as well as a squeezing sensation every once in a while in my upper arms and odd pains in my head and I suddenly cannot lie down on my left side or else my heart skips beats like crazy. If I go to the internist, you can guess how that is going to play out, right?

Hi SammyJo, When you say you were in the Vanderbilt research study do you mean they checked you in sort of as a hospital patient and ran a battery of tests on you? (I've seen this mentioned on their website). I only was seen there as an outpatient last year, not in the research study. I came in for a bit of autonomic testing which was followed by a very long consult. I was given a list of 3 different medications to try (starting with the most benign - the others were just in case the first one didn't work). I was worried about the meds affecting my nightly heart block so I asked if they could give me a heart monitor and they did so they were able to see that being on the meds for a month didn't adversely affect me. All in all it was a very good experience but I still don't have any answers about why this happened to me. Have you had any autoimmune testing? I'm currently in the process of trying to rule out Sjogren's and during that testing I was urged to see an EDS specialist because they suspect a hypermobility syndrome (but the wait for that is so long that it won't happen until at least the summer of 2018).

How bad are your allergies? I was initially told I might benefit from a beta blocker but then a second doctor said I shouldn't take them because I have anaphylaxis and if I needed my epi-pen, I might not respond to it or might need a higher dose. I was given something else to take and never tried the beta blockers.

Wow, FairWy, we have a LOT in common (except I was never one for exercise - but I was always too thin so it didn't matter). My worst symptoms also happen in the morning (usually on the way to work), during showers, bending over, and raising my hands is a definite no-no. I think I'm worse in the mornings because I wake up with low blood pressure and haven't eaten or drank anything for hours (during the day I eat and drink non-stop). My throat feels as dry as the desert when I wake up. Most times my body gives me a warning I'm doing something it doesn't like and if I stop what I'm doing I'll be ok. I'm not sure if you are male or female but my worst nighttime symptoms only happy right before my period - that time is **** for me. I'm going into that period now and I'm actually terrified to fall asleep because who wants to wake up disoriented and having a heart rate of 175? Have you ever had a cardiac ablation? I had one in about 2001. This was way before my dysautonomia symptoms started. What happened was one day I was at work and I took a bite of my sandwich and all **** broke lose. I thought I was having an allergic reaction and then a heart attack. I couldn't walk or really talk and they called me an ambulance. Of course, I was fine when I got to the hospital. Took them a while to figure things out - people accused me of being "nervous". Every workup came back normal and the cardiologist said I had only a 1% cahnce of having it so he put me on a 30 day event monitor. I got so frustrated when it didn't happen again but suddenly on the 29th day of wearing it all **** broke lose. After that it happened every few days (heart rates of 210-230!!!!!). Turns out I had AVNRT (AV nodal reentrant tachycardia). It was "fixed" with an ablation. I did good for a while, had a couple of kids (no problems during pregnancies) but then the tachycardia (to a lesser extent) crept back - mainly at night but I lived with it because they didn't find anything wrong. The tachycardia wasn't that bad so they told me I should try to live with it. I did but several years ago it got really bad and I had light dysautonomia symptoms (just didn't know what it was). I had another ablation about 2-1/2 years ago. At that time I was told I had a high atrial tachycardia. Then the dysautonomia really started. My EP suggested I try Ivabradine if the Methyldopa doesn't help me but I've been a bit scared to stop the Methyldopa because I've improved a lot but whenever I have a set back I think about trying it some day. Do you feel the Ivabradine helping you? Other than feeling like falling apart, they tell me that I'm in great shape (other than bradycardia - heart rates as low as 24 during sleep) and heart block. My heart is otherwise perfect and I ace all the regular cardiac testing. Sometimes I wonder if the dysuatonomia was somehow caused by the two ablations.

I went to the ER today and all they gave me was this lousy hospital bracelet.