khaarina

Based upon what I've read about other tilt table tests, my experience was a bit on the extreme side. I think it just depends on the doctor overseeing the test and how your body responds. Since I was already being treated with Florinef I didn't start to pass out as quickly as I usually do. My test certainly wasn't fun, but had my doctor ended the test at ten minutes and not injected me with the medicine, we wouldn't know what happens when I start to pass out. I really wanted to know what happens because every time I did a home standing test my bp monitor would err out when I'd start to pass out. The test was not fun at all but it was worth it to get that information. Try not to worry too much. Even if you do pass out, once it's done, it's done. And it is such a good feeling to know that finally the right test was done and the the right path of diagnosis and treatment is finally ahead of you. Good luck!

No, they just said not to take the Atenolol this morning. I wish I had stopped the meds because I think I would have passed out more quickly, but I don't think it will affect the results too much. I know that my hr went up, there was a long pause in my heartrate, and it dropped suddenly and I passed out. Also my blood pressure didn't change too much, I think that is significant. The doctor couldn't discuss the results today because he had another tilt test right after mine, but that's okay, I'll call him tomorrow.

OMG I truly hope you don't have to go back to him. That is awful. I've had a few doctors just like that so I know how frustrating and frightening it is to have to rely on someone so inconsiderate and incompetent. After trying many doctors out, I have finally found a primary and a cardio who seem to be taking good care of me so don't give up, you will find someone too. But don't give in to this guy, you deserve better!

Well, I'm back from the test. It was pretty horrible, but that is a good thing I think. The doc hasn't gone over the results with me yet, but the nurse told me some stuff. My heart rate jumped up by about 40bpm while upright. I was up there for a pretty long time with just my typical symptoms: shaky, tingly hands, sweaty, tired. I've been on Florinef and Atenolol for awhile now and I suspect that's why I didn't get all fainty as quickly as I used to. They finally injected me with the medication to get things going and it definitely got things going. I passed out within a couple of minutes. I think this was the first time I have ever actually passed out. I always lie down when I get close, but the mean ole nurse wouldn't let me and believe me, towards the end I was begging. Passing out is the worst feeling ever. But I guess most of you already know that lol. Anyway, I woke up choking on my own vomit. I know, gross. Waking up was pretty confusing and scary. For the first minute or so I thought I was at home and I had dreamt the whole thing. I remember looking at my feet and wondering why I looked like a mummy all wrapped up in that cheap white hospital blanket instead of my blue comforter and then the nurse was right in my face with a scared look on her face which kind of freaked me out. I was extremely nauseous for the next half hour or so. They gave me some juice and graham crackers and that helped quite a bit. The nurse told me that after they gave me the medicine my heart rate suddenly dropped from around 115 to 40 and that's when I passed out. She seemed pretty surprised by this, but we'll see what the doctor says about it. She said that other than that my body responded pretty much the way my doctor thought it would, so I guess that means the test was positive. She was happy to let me know that I definitely don't have to worry about people not believing that I'm really sick or thinking I'm crazy anymore. The test was awful and gross and I am still a little dizzy and nauseous and I have a headache, but I'd do it all again if it meant finally getting the right diagnosis. So that's what happened. A miserable experience but hopefully it will have been well worth it.

Thanks for the tips, this is very helpful! One question, are the test results given on the day of the test?

That's how it was with me whenever I got sick as a kid. Drove my mom crazy. Not so for me now though. Between the doctor jitters, the drive (45 min. on a good traffic day), and the wait (20 min. sitting in the waiting room and 10 min. in the exam room), by the time my doc sees me I'm a sweaty, tachy mess. He probably thinks I'm an idiot because I have so much brain fog when I talk to him I can't seem to string a complete thought together. Sometimes I want to say, "I'm an intelligent person in real life, I promise!"

I just got a call this afternoon from the hospital telling me that my Cardiologist scheduled a tilt table test for me tomorrow afternoon. Well good thing I'm free tomorrow! They probably assume I don't have much of a life given my current orthostatic situation lol. Anyway, I am so nervous! I usually start to pass out around 7-10 minutes so I'm hoping they'll let me down as soon as that happens, but what if I never pass out and they leave me up there feeling like death for a half hour or more! Or worse, what if I'm having a good day and nothing significant happens? I'm on Florinef now, I hope that doesn't screw up the test. Honestly, I'd rather have another colonoscopy than take this test, but I know it needs to be done. I'm sure you all can relate lol. Does anyone have any advice for surviving this miserable test?

I was on Ambien and it definitely helped me fall asleep, but my doctor wouldn't prescribe it this last time because I'm trying Florinef for the first time and he wants to see how I do on it. I also drink a glass of water before I get up. It does seem to help me recover faster. It's so strange to say that I have to recover from sleeping!

Every day for about a year now I've had a ridiculous time trying to get up in the morning. I no longer set an alarm, I threaten murder if my family wakes me up before my body does, I let myself sleep as long as I need to, but still I wake up incredibly weak (not fatigue). The weakness is most obvious in my hands, for the first ten minutes or so after waking I can barely make a fist, but it is everywhere else too. It's like my body is still mostly asleep. I eventually recover, but it takes hours. I have a lot of insomnia, but this waking problem doesn't improve on the nights when I fall asleep easier. I've had my adrenals tested and the doc said they were fine. I've had 2 MRI's that were normal. I've also had a sleep study done, but I was only able to sleep for about 3 hours during it. The report said I move a lot and snore a little (this is new since I've been sick) but no apparent sleep apnea. Does anyone know if this is a normal dysautonomia symptom?

I can drive but I avoid it if I can, especially long drives. Due to my brain fog, I feel like I'm about as competent a driver as someone who is tired or a little buzzed, so not real safe.

I was just telling my husband today that every time a doctor uses a stethoscope on me and asks me to take several deep breaths I start to get very lightheaded. My husband said it doesn't happen to him so I'm thinking it is a symptom. I don't know what causes it exactly, but I imagine singing can cause the same response because singing can cause you to have to take many deep breaths. Of course, this is just a guess.

I did work my way up to 60mg Armour. I started at 30mg after switching from Levothyroxine, and gradually went up over the period of about a year. I'm actually concerned that I'm not on enough. I've read that with Hashi's, you need to be on a pretty high dose to stop the antibody attack, and that some people, especially those with other illnesses like POTS, need their TSH to be closer to 1, so I think mine could be better. I suspect that what Hashi's/POTS patients really need is to stop the attack on the thyroid. Between the hyper rushes and the hypo results, this thing is really screwing me up. Easier said than done, I know. I stopped kelp and started Selenium yesterday, and I'll report if that makes any difference. I've also been reading about Low Dose Naltrexone, but it is very controversial and all the "wonder drug" boasts are making me wary. By the way, like you, I also had my thyroid checked and was told it was normal. I insisted when I first got sick because my mom is hypothyroid. It was several months before they checked it again and found that I was hypothyroid. Then it took me a year to convince my doc to check for antibodies. He totally didn't see the point in knowing and when it came back positive, he didn't see the relevance. It seems that, like POTS, docs are not familiar enough with thyroid problems, so we are really fighting an uphill battle! My current labs are: TSH: 2.5 (.450-4.5) T4: 6.3 (4.5-12) T3: 89 (71-180) TPO: 81 (0-34) Antithyroglobulin Ab: 639 (0-40)

I have been noticing that a lot of people with POTS have Hashimoto's Thyroiditis, so I'm wondering has anyone noticed a significant improvement in their POTS symptoms upon successful treatment of Hashi's or vice versa? What treatments (for either disorder) has worked for you and what made you feel worse? Here is my account regarding treatments in case other Hashi's or POTS patients are interested: I reacted badly to Levothyroxine so I switched to Armour. This made my thyroid labs look better, but I don't feel better, well better than on Levo, but not well at all. Kelp and L-Tyrosine didn't seem to do anything at all. I'm about 3 weeks into Florinef and not doing well (headaches, insomnia, fluid retention). My tachycardia and self standing tests improved, but overall symptoms didn't. Atenolol seems to help my tachy and I felt terrible when my doc told me to cut the dose in half, so I went back up to 25mg and have been there about a year. Anti-depressants were a flop. Most did nothing, Paxil made me a zombie even a a very low dose. I was on Clonazepam for a time and I did notice a significant improvement. I think high adrenaline is a big problem for me. I stopped taking it though because I was concerned about long term affects. Sleep is a big problem for me and only thing that helps is Benydril and Ambien. The others I've tried were OTC sleep aids and Trazodone. When I was having nerve pain nothing helped. I tried Tramadol, Nortriptyline, Cyclobenzaprine, Tylenol 3 (the latter made me nauseous). Thankfully, the nerve pain eventually went away on its own around the time I started treating my thyroid (hmmm). I got a shot of B12 for energy, but it did absolutely nothing. I took Hydroxyzine once for chronic itching and it made me severely irritable, my husband called me crazy. I stopped that immediately. Once, about 5 years ago, I had a permanent birth control procedure (Essure) done and they gave me Epi-Lidocain and I had a severe reaction right there on the table. Heart racing/pounding, total body jerking, hyperventilating, I felt like I was going to die. I think some of this is normal, but to the extent I had it, definitely not. This was long before I knew anything was wrong with me. Also, I learned recently that I am allergic to Sulfa now, and I have outdoor allergies and sensitive skin. Growing up, I was never allergic to anything. I used to make fun of my step sister because I could roll around in poison ivy and not get it but she couldn't go within a few feet of the stuff. I even tried going gluten free for a month fairly recently. No effect while I was off gluten and no affect when I went back on it. So that's about everything I've tried in the past year and a half. Some wins (sort of) but mostly fails. Would really be interested to find out what works and what didn't work for for others with both Hashi's and/or POTS.

That's the way it is for me. I have found some patterns in my symptoms. For example, I tend to feel better in the early evening. But everything seems to be a trigger and my symptoms fluctuate from one day to the next or one minute to the next. Making plans just ends in frustration and self pity, so I do everything I can to avoid it.

Is there any relationship between POTS (or possible causes of POTS) and water retention? I have been having clear signs of pretty extreme water retention: swollen, shiny, itchy skin, deep creases in my skin from clothing especially when I wake up in the morning, belly distention, and weight fluctuation. I am worried that this is a sign that something more urgent is going on with my heart, but my doctor didn't seem to think much of it. I am taking Fludrocortisone (Florinef), but the fluid retention has been going on since before I started taking it. I have also increased my water intake and decreased my salt (a little). Also, if I'm already retaining excess water, doesn't that mean I don't need a blood volume medication like Florinef? I'm so confused.

I've tried Celexa (no affect), Nortriptyline (no affect), and Paxil (just made me tired and spacey). If I were to try one again, it would be the Paxil because at least it helped me sleep.

Over the past year and a half I have seen around 20 doctors (many of then specialists), and in my experience there are more bad doctors out there than good. This is really sad, but it seems to be true. I also experience anxiety at doctor appointments, even though I have a pretty good doctor now. Maybe I am just afraid that he will stop taking me seriously or drop me for whatever reason and throw me back to the wolves. I have had to start measuring my heart rate and blood pressure at home because they are always so high at the doctor's office, and I'm positive it isn't just the POTS causing it, though I am sure it doesn't help. My doctor isn't perfect. He doesn't know much about POTS, but he is learning, and the staff loses and misfiles my paperwork a lot, but it gets worked out. If they started messing up my records to the point where it was interfering with my treatment, I would have to find a new doctor. You have to do what is best for you. No doctor is perfect, but I believe there is someone out there who will give you what you need if you keep looking. Have you tried going to a medical center rather than a private practice? Sometimes working in the same building with other doctors keeps them in check.

I usually take OTC allergy pills because I often have general itching and sinus/TMJ problems along with the insomnia. Ambien works really well for me too.

I've only known about POTS for about a month, so I didn't know to check my standing bp back then. I started with Levothyroxine about 14 months ago and felt worse on it. I switched to Armour and started taking Atenolol about a year ago. My thyroid labs leveled out, but I'm still sick and it is hard to tell if my symptoms are from my POTS or my thyroid.

I hadn't considered that it might be the atenolol. I will ask my doctor about it. My resting blood pressure always runs around 105/60 now and I have been on Atenolol 25mg for about a year for my tachycardia. When I do a standing test my bp will raise a little bit and then err out when I feel faint. I figured it was dropping suddenly, but I wanted to get some opinions before I brought it to my doctor, so thanks very much for all your replies.

After learning that I have POTS, I bought a blood pressure monitor and did standing tests on my two kids and husband. Mainly, I just wanted proof that my reaction to standing is not normal, but I also had some concerns about my 13 year old son. Sure enough, my son couldn't stand 4 minutes without almost passing out. My 9 year old daughter had no symptoms, so that is great, but now I am really worried about my son. Of course I will be taking him to a doctor, but I'm hoping the more I find out about my POTS, the less tests and doctor appointments my son will have to go through. Is there a particular cause or subtype of POTS that is more likely to run in families?

Hi, I am new to the forum and fairly new to the POTS diagnosis, although I have been sick for about a year and a half. I recently bought an automatic blood pressure monitor to try to identify what causes me to feel faint when I am standing. After a few minutes my pulse goes up about 30bpm, but I already new about that. At around 7 minutes I suddenly feel extremely nauseous and faint and every time this happens, the monitor says "error". Does anyone know what might be causing this?