Debbie Rose

Hi Xhale, As Sarah said the specialists can tell you more, especially cardiologist who will also explain and evaluate your use of your propranolol. Everyone has a varied reaction to medicines so even the same med and dose can help one and not the other. Sorry to say a doctors visit is in order. To answer your SVT question-as Sarah stated there are different types of tachycardias and no, it can not be determined without and EKG (electrocardiogram) And I had a 21 day monitor on me-they are very small now a days-to help them see my episodes. That could be helpful too. Hope this helps Please keep us updated Debbie

All the terrain within miles would be flat too so those that can walk won't be challenged with hills. And "fainting sofas every 250 yards (?feet?) to rest on Lots of shade trees everywhere so direct sun is limited, and canopies in front of all stores and homes And the towns name?? POTSTOWNE (Has to be fancy and special spelling because we all are special and fancy) LOL!! What fun Debbie

Sorry, wanted to explain SVT for you-it can be a dangerous rhythm if it stays up-my Mom's would go to 240-280 and my sisters to 280-300 with dizziness, near fainting, shaky all over, shortness of breath for the length of time of the rhythm. If you ever see Emergency shows SVT lasting a "long" time can need cardiac "zap" with a defibrillator if meds don't work (but they usually do-better meds these days) Has the docs in ER ever say what the rhythm is when you are there? Debbie

Hi XHale- that sound so horrible and frightening! My doctors-not yet diagnosed-feel it is a punch of adrenaline which causes my symptoms but they are nothing as severe as yours. Have you seen any cardiologists for this yet? An EP cardiologist works with rapid heart rate for all kinds of reasons-adrenaline included and may be able to help Both my Mom and youngest Sister had sustained SVT due to excitement (my mom) and emotional stress (my sister)-it is genetic in our family going back 3 generations now My Mom's was just a few beats when she was younger but became worse with age-the cause?-excitement from company coming, or me coming to take her out to the movies and eventually her "thinking" about doing things. She eventually had an Ablation 3 times and then a pacemaker My sister's symptoms was related to work stress and a bad break up-she too was ablated. My heart goes both low at rest-45 to 55 and when bad it goes to the 130-150's. But since my resting is so low that rate causes all the other symptoms I would encourage you to seek you PCP's advice and referral to a specialist-it is a horrible feeling and if it is an irregular or dangerous rhythm your heart will eventually become stressed too Hope this helps, and keep us updated Debbie

Hi Kelly, Yes thyroid is a pain. I had to convince my Endocrinologist to continue my thyroid dose at first. I have symptoms of low thyroid-all of them!-with the numbers showing in the lower end of normal. There has been research out there these past few years that labels me in the "Sub-normal low thyroid " category. And once we had the discussion she was willing to keep me on it.I had moved and my previous Endocrin Doc was happy to work with my numbers Its amazing how a tiny adjustment can do so much. We have low thyroid in the family and my Mom's was a struggle to manage even though she was a woman of routine and never did anything different to cause the change Our bodies are so challenging! LOL! Glad to hear you are still doing so well and you are being cautious and aware-which is so important with such a WONDERFUL change Hope it stays Debbie

You are a remarkable person Mikey, as is you SO. Not many people stay in relationships where illness interferes with expectations. When I started to adjust my lie to my illness-fibro in 95-I lost all my friends who could not understand why I looked fine but could not go out for a day on a day off. I had to reserve my energy for my job. And half my sibs (of 6) thought I was just "lazy". So pat each other on your backs, you are a special couple. Debbie

I had gastric bypass in early 2000 so I have always used protein shakes on and off. I use a whey protein mix with 24-32 grams of protein per serving and of course chocolate flavored. But I also like greek yogurt-protein, carbs and calcium! Now that I have had the florinef adjusted I am no longer constipated-such a blessing after years of trying to be/get regular Debbie

When I had fibro fog (from overdoing the day before usually caused my fibromyalgia to cause more fatigue and brain fog) But also because of the difficulty with focus and concentration I was on Provigil for a few years-really helped me a lot. The "Video" on this website talks about a few different stimulator meds too Debbie

I ruptured 2 discs in my neck in the 80's with re-injury 2 more times and after the 2nd re-injury I was "diagnosed" with Fibromyalgia-which I never seemed completely to fit all the symptoms but that was the late 90's

How about an update Kelly? I found myself feeling normal for the first time in decades when I started florinef (guess I am lucky-no bad side effects) for 2 and a half weeks then slowly stopped working-just started half dose more-I am hoping it works again When my symptoms became extremely bad I was caring for my Mom with dementia and she was getting worse each month, my sister just moved in again (she has mental issues) and my job suddenly became extremely stressful with new demands and tighter rules. I definitely know emotional stress makes my symptoms worse. (My Mom is now in assisted living memory care place and my sister knows my health issues now)

Katie is right on this-Chiari needs further follow ups and autonomic dysfunction includes balance-we expect our vertical and horizon norms to be solid but with autonomic issues its just one more thing it can cause. My peripheral neuropathy is probably POTS but since I won't see specialist till the 30th I am guessing

Hi, I am Debbie and I am 60 years old and an RN. I have been convinced I have a dysautonomia of some sort for many years. In '86 I ruptured 2 discs in my neck. I refused surgery(not a success back then) and it eventually stabilized. Somewhere in the early 90's I started with fatigue, joint pain, muscle pain, migraines or milder headaches every day along with depression. In '95 they told me I had fibromyalgia with sleep apnea so I wore a c-pap and eventually had gastric bypass and lost 110 pounds-no more sleep apnea and much less pain. But my fatigue, brain fog, memory, focus and concentration issues stayed with other symptoms popping up as I went and made adjustments with my life and job. In 2009 I spent the afternoon at the ball field with the temperature in the 70's and sunny. That night I was very fatigued and the next day I could not move, the fog and fatigue was severe, my arms and legs heavy with whopping migraine. Saw my PCP and she was concerned with MS probability and a brain MRI showed 2 lesions. Labs showed no titer for Lyme's but positive titer to EBV Moved to NC for family reasons and so had to continue my evaluations in NC-long story short-MS was ruled out-but hey! 2 brain lesions!! Less than a year later I get up from lying down to let the dogs out and my BP plummets, my heart races, I get short of breath, my legs get wobbly and I get chest pain-what is going on?!? And each time I get up too fast -BAM!! So I go to cardiologist-normal stress test, echo basically OK too. Put me on a Beta blocker and told to take more salt. Well beta blocker made me so fatigued I couldn't get out of bed. So I went on with more adjustments to my life and job Almost 2 years ago now, I started looking into causes of these symptoms-UNC Cardiology, had a negative experience. Referred to Duke Cardiology. In the meantime my PCP checks my labs and my chronic anemia is a little worse so Colonoscopy was overdo-done-negative. Seeing therapist who thought I needed to se Psychiatrist and also set up an appointment with Neurophysiologist to be tested for memory, focus and concentration issues-tests showed I was normal based on my age et al. Of course I was well rested and unstressed too. I think that with symptoms of POTS the equation changes, especially with anxiety. EVERYTHING! Takes Forever!! Duke cardiologist did BP's lying, sitting and standing (and saw the changes) and asked a lot of great questions and suggested I might have POTS and was going to start me on the new med IVb... something but one of my meds sent up an alert. But he did send me to Duke EP Cardiologist Dr.Daubert who finally said it sounds like POTS and started me on florinef. He also informed me that they now have a Dysautonomia doctor and 2 NP's too and I have an appointment Oct.30th YEAH!!!! The florinef was fantastic for 2 and a half weeks-No fatigue, better bowel and bladder normalcy, better hearing, less drop in BP or other symptoms were less too! I finally felt totally normal-no depression and no fatigue and able to do things I haven't done in decades! But them the dose slowly stopped working. The doctor was willing to go up by half a dose and being careful to monitor my BP and get labs done. So just started it yesterday So that's me-with all the ups and downs. Glad to be here sharing and learning

I have had depression most of my life and am on welbutrin, paxil and trazadone for sleep. With the onset of my first POTS episode my depression was its usual-only moderately controlled and my fatigue (was told it was from fibromyalgia) was there in its usual up and down state. With the symptoms of hypotension, shortness of breath, rapid heart rate with shaky legs (and chest pain if I push too hard) anxiety started and my fatigue got worse but my depression did not. Still working to find someone to diagnose POTS My therapist sent me to a psychiatrist who felt that with my cycles of agitation and irritability periodically with underlying and chronic depression she felt I had hypomanic bipolar depression. Once I started Latuda my depression was G-O-N-E !! I felt "normal" for the first time in 35-40 years !! But my fatigue was still there. If I overdo or am stressed emotionally or physically my fatigue gets worse along with brain fog and more fatigue the next day

I have peripheral neuropathy with numbness and lack of sensation of both legs-unknown cause a year or 2 before my first POTS show up and always thought the lack of balance was related to it. But I think as everything autonomic-horizonic and vertical self adjusting is probably off too. Love my smallish house with "pokey" halls and furniture strategically placed for support throughout the house. I also take a cane with me outside just in case

I will get rapid heart rate with chest pain when I go to bed-lie down-if I have "snacked too heavily" before bed. And it took a while experimenting on amounts, types and time frame to figure out what works. Remember our gastric system is very sensitive and nerves under the diaphragm go wonky- I don't know the mechanisms I just know what works Also Reflux may not get up to the back of your throat but can trigger chest discomfort too, as can a hiatal hernia (one of my issues) Just wanted to share my discoveries along the way

I was started on Clonazepam when the POTS symptoms got worse and started to cause anxiety as well. In the distant past I had had a problem with pain meds but got off them and stayed away. But I am very cautious with how much I use my clonazepam-for me it works to take less-half a dose if it causes grogginess. That's how I started out-being careful. But when the anxiety with rapid heart rate would occur the pill helped and I was not tired or affected by it at all. It does lower my HR (heart rate) and decreases the SOB (Shortness of breath) I get with it. So don't really understand the how or why but it works

I had to go on disability at the end of May because my POTS symptoms started activating with stress of the job and the anxiety kicked up too and suddenly I was forgetting things, skipping a set of routine questions-causing my scores/evaluation to be affected. No One was willing to diagnose POTS and in NC there was only one person in Charlotte who treated but did not diagnose (holistic/homeopathic). So over a year ago I started the typical rule out scenario Did I mention I am a Nurse-RN. So saw cardiologist and EP Cardiologist with 21 day monitor (which got lost) and attempted/failed ablation with no one willing to label anything. And on and on...... But I also saw a therapist for anxiety and a Neuropsychologists for the memory-they ran all kinds of tests for memory, concentration, focus as well as mental conditions. On the day of the appointment I was told to get plenty of sleep the night before and day before to be hydrated and in non stressed state. And then I saw a psychiatrist too later that month The results were very interesting- I was normal for my age with all function-under those conditions But we all know how stress can affect our conditions-and that is the key item that needs to be added to the equation The test also found I have probably been hypomanic bipolar with depression and NOT Major Depression-once they added Latuda I was no longer depressed-FOR THE FIRST TIME in 35 years!!! or more-nice Anyway-just wanted to provide info on where to seek testing if interested-it is very thorough

I work for an insurance company and for the past 6 months we have been receiving info on the new ICD-10 code but no one was sure when it became official. It is a very in depth detailed coding that will allow more specific diagnosing. October 1st or there abouts was open date ICD-10(was 9 on day my doctor told me-because it was not yet official on 9/29) for POTS is 427.89 Just wanted to be sure everyone is aware so you can ask your MD's to look up specifics Debbie

Thank you for all your kind words and advice...Yes, she used a tuning for to my forhead....Oh and she agrees I have some numbness and parathesia and than can lend to balance issues-but it can be from anything!! So I accidentally found a short term relief of symptoms and maybe someone can explain it. My mom fell at IHOP while we were leaving the rest room. They had rolled up carpet right next to it. She hit her head hard and immediately a goose-egg formed...So I insisted they call Ambulance and we went to ER-CT was OK and she is fine OF course I know I had an adrenaline rush...As a nurse I have experienced under emergency situations...I am always calm in such situation but my adrenaline is not..... then the crash and headache followed All the rest of the day and part of next I had no tachy HR/BP drop issues Did I run out of my adrenaline???

Did an experiment on sweets last night and today and MAN oh MAN!! I get tachy to 132 with cake and cookies! My last vice!

:( At end of appointment finally found out there is no one who is familiar with Dysautonomia even though they still have a plackard up indicating a clinic...GGRrrrrr, So my diagnosis-Anxiety!!! She put a tuning fork on my forehead and since I only felt the vibrations on the right side-it was a trick>should be felt on both sides; she determined it was Anxiety! Yet then admitted to knowing nothing about dysautonomia. So now I must try to save money (not too big a deal) and time from work-very hard to do since I have bad days ALOT! So off to Mayo in Fla this winter I guess...Didn't even look at MRI, took a blood test to check Sjogrens.Oh yeah! SOrry but it was an exhausting anxiety causing day...AND my BP was fine there!...so more frustated

Great timing for this discussion I recently went off metoprolol and WOW! I had some energy all of a sudden!! Of course now my HR is up with symptoms so I can't even take advantage of it...But good info to relay to MD when I go tomorrow to NEuro

Fried- What kind of BP machine do you have?? The one I got at walgrens won't register less than 80/50 it just says EE...I would love to have a record so I can show doctors as I have yet to be believed...Thanks for all the info-Today..Day 4 off Beta I have increased HR in am But at nigh is when it clips to 160-170 and I have the symptoms..Neuro Appt tomorrow!!

Thank you for all the responses...hopefully I will leave with a diagnosis...Boy my symptoms are really cranking up now..so I'm doing very little except going to work today

In preparation for my Neuro visit at UNC I am off my beta blocker and didn't realize I have been on them almost a year. And I don't recall having headaches like this before...do more symptoms develope over time?? Hopefully will have some answers on Friday