Jump to content


  • Posts

  • Joined

  • Last visited

Recent Profile Visitors

3,056 profile views

masumeh's Achievements


Newbie (1/14)



  1. tampafd, watch out for those anti-nausea meds...Phenergan causes high heart rate, and Zofran causes constipation and can cause seizures if you're predisposed. sometimes ginger can help...the fresh root, smelling it or mixing it finely chopped into something you eat or boiling it into a tea (but be careful there also because too much ginger causes polyuria).
  2. oh, forgot this, came to mind... your "concussion and whiplash" doesn't sound like either. I've had both. a concussion comes with headache, like the worst you've ever had, and neuro symptoms such as slurred speech, double vision, mood swings. sometimes nausea and vomiting. you will feel this pain in your head immediately, and it would last for hours to weeks or even months, depending on how severe the concussion is. easiest way to tell a concussion is immediately following the accident, look at the pupils. as for whiplash, the typical development of symptoms is that you don't feel anything for a couple days after the accident, then start to notice a very stiff neck, light nausea, headache that feels like somebody squeezing the back of your head. the neck muscles are spasming, and this shows up on MRI. as for stretching nerves or pinching them, are you hypermobile?
  3. Hi navyblue, College is a crazy time...there's a lot of latent stress, stressful things that affect your body without you perceiving it as stress because stress can be good or neutral and still affect you...it's such a pivotal time for most, career, social, and other vital parts of who you are come together in these years...but no pressure . You definitely don't need these worries about brain tumors, MS, etc. on your plate. I hope you get back to your normal health soon. Here's my advice: #1--Before you (or any doctor) can say you have POTS, you need to see a cardiologist in order to rule out other causes of these symptoms that commonly show up at this age and are common to young women (e.g. heart arrhythmia, pulmonary hypertension). The cardiologist will conduct an echocardiogram and EKG to check your heart health. #2--If you do have POTS, there's a lot you can do to try to battle the condition, and it helps if you catch it early, before you lose too much of your health and resilience. Start now. *Stay physically active. In particular, work your calves because this will help aid venus return. POTS is not like having the flu where you just need to rest. It's counterintuitive when you feel crappy, but you need to stay active. Bed rest will only make POTS worse. *Stay hydrated. Some of the orthostatics your describing are similar to results for dehydration, as are the dizzy spells, especially given that you said your BP rises (which is a contraindication to autonomic damage). And anyways, POTS sufferers need to pay particular attention to hydration, including electrolyte restoration. Drinks with electrolytes like Gatorade and EcoDrink are helpful. Drink LOTS! *Relax. Stressing over your current symptoms, which don't seem to be disrupting your life from what I understand in your words, might A) make your POTS worse if you have it, and B ) create a problem where none exists if you don't have it. Illness anxiety is partially characterized by a belief in "perfect" health; that does not exist. There are many simple causes to what you're describing. And hopefully, it's just one of these and will pass quickly for you. #3--Last advice I can think of for you is to find a doctor who is experienced in POTS, since that's what you suspect you have. Many doctors just don't have enough understanding of POTS to give you an answer either way, ruling it out or diagnosing it. When I was 21 and first searching for answers, I saw like 40 doctors with some really severe presentation of typical POTS and they just kept telling me all their tests are normal, and am I stressed, and bla, bla, bla...I was also in college, so you're giving me deja vu now ....that was in 2002/2003 though, and POTS only entered medical diagnostic manuals in 1996, so hopefully things are better now...find a doctor who can conduct a Tilt Table Test. If he/she can't, their clinic is probably not equipped to assess a POTS patient. You might try using the physician directory on dinet's webpage. Good luck!
  4. my onset was age 20, during my first pregnancy (but I also had primary mono infection at the same time)...my health was down after taking INH, a high risk medication for TB (which was prophylaxis for me, I was PPD+ but inactive)...the INH destroyed my stomach and I lost weight unintentionally due to the GI problems...then I got married, which is stressful, and exposed to a lot of new viruses because my husband is from the developing world and I had hardly ever left the US...so I got mono (Epstein Barr Virus) two months after marriage, and was 4 weeks pregnant at the same time, then had a pulmonary embolism, so was hospitalized in the PCCU, so developed pneumonia as a nosocomial infection...my health was just totally shot. Nobody called it POTS until four years later, when I was still fainting, fatigued, and short of breath. At that time, the doctor said it was probably from the EBV/mono infection. Nearly ten years after this initial diagnosis of POTS, I was diagnosed with EDS, after many joint problems became apparent...so the POTS may be from so many predisposing factors combined in my case. Some ladies get POTS during pregnancy because of autoimmune problems, which is difficult to pin down. It's been suggested to me that I have some mitochondrial disease. So, God knows. I just try to cope, see what works for me and what doesn't, and keep moving forward.
  5. about 2 weeks for me. but btw, you should try to stay out of bed as much as you can...it doesn't help, only makes things worse. keep moving as much as you can, even if you don't feel well enough to return to work. get out of the house...do chores...see friends...stay on your normal routine as much as you can. going out in the daylight helps with sleep quality at night. worst thing in the world for POTS, from my experience, is staying in bed...your muscles decay fast, and then it's hard to recondition.
  6. If marathons and toughness is your norm, you might feel like crap just being in normal health . Seriously though, people with high athleticism in their history before POTS onset can sometimes get POTS or POTS-like conditions from very short periods of bed rest resulting from simple illnesses, as short as two weeks. I've heard this from several of my healthcare providers. The key is to recondition but very slowly. It's frustrating because it doesn't feel possible to exercise at first. Your GI problems sound like a place you might start, in terms of what you can do to feel better. You have a constricted esophagus, right? You can get that fixed. It's terrifying when things get stuck, and it's genuinely dangerous. My sister-in-law has this. Nexium helped her a lot, but she ultimately had to do the surgery to get it really fixed...after so many trips to the ER with stuck food. If it's just spasming, there's a medication for that. I took it years ago for some esophageal spasms I was having, and it worked instantly after months of cardiac pain from the spasms rubbing up there, and an incident asphyxiating water (I had avoided going to the Dr because they never seem to understand anything...but surprisingly, with no POTS experience, this GI doc knew just what to do)...if I find the name of the medication, I'll post it for you. Oh, and a barium swallow test won't show it. I think if you have this going on, you have to be REALLY careful when you swallow. You can't just casually gulp some water while standing...you have to sit down, be relaxed, not breathing heaving from exercise or something. But they should be able to help you with this...not POTS specialists per se but just a good gastroenterologist.
  7. slow heart rate is so much worse than high heart rate...and your 55 HR is low...though people don't usually feel it until it dips below 50. I had bradycardia as a side effect of Midodrine when I was on it years ago, and went unconscious several times with HR into the 30's. It feels like dying...like ur blood is sludge. U said ur BP is "perfect"...u mean 120/70? Sometimes low BP doesn't attract anybody's attention, but it can make you feel very dizzy. oh yeah, and CONGRATS! on the baby That's an exciting time.
  8. hmm... generally, I skip breakfast because I can't handle it, and I don't eat late at night for the same reason..my "snacks" are usually just mini-meals, grabbing leftovers a bit. Here's a sample day with different meal options listed: 11AM--snack--e.g. plate of salad; half bowel of leftovers from last night's dinner with meat; handful of blueberries; piece of cheese 2:00PM--lunch--chicken with rice and vegetables; pasta with vegetables and beans; chicken and vegetable soup; burger/fish and fries 5:00PM--snack--yogurt; veggies and dip (carrots, cucumber, celery); chips; cheese; salad; leftover cooked vegetables; fries 7:00PM--dinner (sometimes skipped)--pizza; ramen noodles; egg sandwich; rice and lentils with yogurt salad; fish and vegetables Between this, lots of drinks (mostly water).
  9. Pregnancy is difficult on the body...it's a huge strain, takes from all your vitamins and nutrients, messes with your sleep, joints, mood, EVERYTHING! So, yeah, I think any underlying health condition can be exacerbated during pregnancy, especially something with an autoimmune component (and some POTS sufferers have autoimmune involvement). Personally, my pregnancies are horrific on my health, mostly because of being bedridden cause muscle atrophy and weakness. The most dangerous complication I face in pregnancy is thrombosis. During pregnancy, my liver produces too little anti-coagulant (Protein S deficiency), and I consequently suffered a blood clot in my lungs in my first trimester of my first pregnancy (after which, I knew to take blood thinner/heparin shots during pregnancy and postpartum). As long as I'm taking my heparin shots regularly (daily), I shouldn't worry too much about clotting problems. However, of course, since thrombosis could mean a fatal heart attack, disabling stroke, or another pulmonary embolism, it's worrisome anyway. Around the time of my first missed period, I start vomiting..all day, all night, even in my so-called sleep I wake up choking on vomit...I throw up until my face bleeds around my eyes...this is called Hyperemesis Gravidarium (HG). Zofran anti-nausea medication helps but I'm still literally unable to move without throwing up. Everything makes me nauseous--the air, enclosed spaces, the neck of my t-shirt rubbing my throat, sound, smells, my hair touching my neck, light, the very thought of food. I live on IVs for the first trimester and first month of the second trimester. It is traumatic. And of course, it results in de-conditioning of my leg muscles from being effectively bedridden for several months. Additionally, the Zofran which is saving my life causes me seizures, but I have to live with that. I become extremely weak, BUT the higher cortisol natural to pregnancy helps keep my blood pressure closer to normal than usual, and so as soon as I get over the worst of the HG, I can start retraining my legs and trying to get back to myself. So there's this eye of the storm in the second trimester, in which I do faint frequently (have to be so very, very careful not to faint forward facing onto my belly). Then the third trimester hits, and the heart burn and swelling and lax joints and vascular laxity begin. It is very difficult to sleep with a big baby belly. That hurts my POTS. I get premature labor and get put back on bed rest, which again destroys my muscle tone in my legs that is supposed to aid in venus return and compensate for overly lax vascular walls. The birth is horrendous...my daughter was a prolonged labor despite all interventions to induce...after two and a half months of premature labor, the last ten days of which I was contracting every 2 1/2 minutes around the clock, my cervix just was like a brick wall, not shortening, softening or dilating. Even with a cervical insert of chemicals to induce labor, even with IV pitocin, even with the doctor breaking my water...she had to manually dilate my cervix while I was on epidural...the baby was born 38 hours after the contractions became too difficult to speak to anybody...by vacuum delivery. This is called prolonged labor. Or ****. Take your choice. But I have to say, my daughter was worth all that and more. She's my life. Postpartum, I pushed myself to the brink and beyond to do for her like other, healthier mothers could. I had many fainting episodes, multiple times daily throughout her first year of life and toddler years. But she was never injured or neglected. My mother and my husband knew I had ups and downs throughout the day and would come when I called for help. We lived in an extended family household, so help was usually just a floor away. But I didn't really get much help, to be honest. I changed 99% of her diapers, exclusively breastfed her for 6 months before starting solids (continued breastfeeding until 14 months), sang to her, rocked her, gave her tummy time, walked her to the park every day, took her to play groups, babysat my nephews her age so she had constant playmates.. And she thrived, hit every developmental benchmark early. She started talking at 10 months and reading at age 3 1/2...this summer, she turned 12 years old, finished high school algebra and is currently taking part in a special science camp for gifted children after testing in the top 1% of all nominated gifted students in the nation (we're in KSA)...she's fully bilingual (Arabic and English). She is sensitive and compassionate, well-mannered and a joy to be around. She has memorized half the Qur'an and plans to finish the remainder over the next few years. She's read hundreds of novels with passion and analytic criticism. She's artistic, good-humored, loves to surround herself with funny, adventurous friends, and is very close to her grandparents on both sides, and all her cousins. So, I have POTS. At times, I have it bad. My mother-child journey is different than healthy mother-daughter journeys because of POTS. There were moments, when she was a toddler and just learning to speak, that she would sit near my side while I was having a seizure and say, "Mommy, don't die. I need you!" I could hear her, but I couldn't move. When she was in preschool, she was constantly worried that I would die because she wouldn't be there when I fainted...and I had to tell her, that's not her job...her job is to be a kid, and she's not responsible for me, I'm responsible for her. There was a time she didn't understand what I had, and she thought I was hiding a terminal diagnosis from her...and I had to remind her that I never told her stories about tooth fairies and Santa Claus, I never told her fiction without telling her this is imaginary, I told her she knows I would never ever lie to her, and I had to promise that if a doctor ever tells me I am dying, I would tell her, and I'm not dying, people don't die from POTS. There was a day when, after recovering for a couple years to a level of fully functioning and having no seizures or fainting episodes or plague of fatigue, I became pregnant again, and sick again, and my then eight-year-old daughter had to see me go through all those months of illness and vomiting and see me again having seizures, and again blacking out, and again unable to do anything due to no energy...and she came to me and said, "Mom, if you're going to be sick again like you were sick before, I don't want to exist." And I told her, she's stronger than that. I'm stronger than that. Our family is going to be okay. We made it through, and she was the happiest big sister, finally having someone in the world with her unique genetic makeup (part Iranian, German, American, Sudanese, Turkish, Tunisian, Egyptian)--and somebody to boss around ('cause boy, is she the boss!). Since then, I'm working on trying to do for this little boy what I once did for a little girl who is now a brilliant young lady. He is a whole other story! So I have POTS, but my daughter is thriving. We talk about everything, how she feels, how we cope together as a family and it makes us stronger in our love for each other. She's coped with my illness through art, horseback riding, math (her passion) and having a very active social life. I've coped with my illness by focusing on her. Honestly, if I didn't have POTS, I would probably have worked full-time and put her in day care and we'd never have the incredible mother-daughter story that we are living now. And if I didn't have her, I probably wouldn't have had a reason to push myself out of bed every morning. You say you're worried about your energy, and that's understandable. That's reasonable to calculate and consider. But motherhood is just not something that adds up in the conventional way...it'll be the energy of your heart that matters most. So, don't worry. You'll be a great mom!
  10. My autonomic test came up normal, even though my TTT clearly established my POTS diagnosis (on a good day, but we're all different and some people have borderline cases that are more difficult to diagnose). My TTT showed 75% blood flow deficit to my head when tilted up (10% is normal). My stress test felt good to me, but the technician ended it early because my blood pressure was rising dangerously high and she believed I was going to faint from my appearance. (I faint a lot.) I blackout when I stand up too quickly, and often faint several steps away from wherever I was sitting...neighbors know they can't expect an answer if they knock on my door when I happen to be sitting down or laying down...my family all jump out of their seats to catch me if I forget and get up too quickly. The blood pooling in my extremities is visible. But my autonomic tests came back perfectly fine! It's really annoying because I had read and always assumed POTS meant dysautonomia. In my case, however, it might be because of Ehlers Danlos Syndrome, a genetic collagen error that makes my connective tissue too loose, including vascular walls. My autonomic tests came up normal, as did my nerve conduction study, brain MRI, EEG and EMG...all neurological indications show normalcy, but I have lost some feeling in my hands/arms and feet, hearing, some degree of fine motor control in my hands, and overall balance...AND, I'm quite sure now that I've been having seizures for years, not just fainting episodes. So, this was unexpected for me, that it all looks normal in their tests and scans. The doctors told me to come back in a year or so in order to see if there is any change because they have to see two standard deviations from the norm in order to conclude that the test shows pathology, and maybe I just am not that bad yet. Not comforting. They did find vitamin D and B12 deficiency...and I am actually regaining fine motor control and feeling in my hands since supplementing these vitamins. We are puzzles. They can't figure it out. Just try to get at least a piece or two that can help you recover...it takes a long, long time to sort through it all. I've found that it's helpful to narrow complaints to a single question for a single doctor, get the answer, and move on. For example, I thought I might be having chiari malformation...went to a neurosurgeon experienced in POTS, EDS and chiari problems...from the MRI, she was able to rule this out, but told me that my discs are degenerating, hardening and drying out and growing bone spurs (osteophytes) into the spinal canal that are beginning to touch my spinal cord (and are inoperable). So, good to know. I had to have the two pieces of information that took me years previous to this visit to obtain for her to be able to properly assess me: POTS and EDS...so, it's just one step at a time. I dunno if this response is helpful. Obviously, I can't tell you what you have. Hope you find your answers.
  11. I was tested for Addison's disease early in the onset of my POTS, before I had the POTS diagnosis...they told me they were just testing for everything that could possibly cause fainting...initially my cortisol came back low, so they did a follow-up ACT stimulation test, but that came back normal (high actually)....no adrenal insufficiency, no Addison's disease. I also have several of the symptoms though, and I presume there is some adrenal disregulation going on alongside all the other POTS stuff.
  12. Hi, It's been a very long time since I posted here, so apologies for that. I recently found a drink that works to help me with my POTS symptoms, and I'd like to share it with anybody else who is sick of Gatorade or can't tolerate the sugar (even in G2). The new drink is called "EcoDrink". It contains electrolytes, minerals and vitamins but no sugar. You buy it in the form of little individual powder packets that you mix with a pitcher of water and drink over the course of the day. This drink helped me a lot because I cannot tolerate sugar (due to seizures) and I'm tired of having to manipulate myself so much with what I eat, adding salt, etc. to keep more of the water I drink in my system (I have polyuria and cannot tolerate florinef/fludrocortisol). Before I discovered this drink, I was constantly battling with fluid intake and salt intake issues. It's helping me with vitamins and minerals too, which is great. I've been taking it for more than a month and haven't seen any negative side effects (and I usually get all the possible negative side effects, very sensitive to everything). The positive effect of this drink, for me, was similar to the effects of Midodrine, without the side effects. I even felt a little goose bumpy...my brain fog decreased, memory/recall issues improved markedly, energy up. I also discovered that I was vitamin D and B12 deficient around the same time, and I started supplements, which obviously also helped. I was even able to exercise and started jogging daily...something I haven't done since before my last child, four years ago. My dad discovered this drink first. He has polyuria also, but from diabetes. It gave him a new breath of energy, and helped him hydrate safely without consuming too much sugar. Now, we're getting my mom on it, because she doesn't have any particular health problems but just feels tired and sluggish and "senior" kind of brain foggy...it's working well for her too. They sell EcoDrink in Cosco grocery stores, but you can also order it directly to your home via Amazon. It's about $20 for a box of 30 packets (again, each packet makes several drinks, so it costs less than a dollar a day). I can't guarantee that it would work for everybody here..but it is certainly worth a try. Believe me, I have tried many, many things without any success or with success that is unsustainable because of unwanted side effects. This drink is amazing me. I hope it works for others here too. -Masumeh
  13. it it works for you, i think your doctor should up the dosage (in terms of taking it a few times a day rather than just once). you should talk to him/her. i took midodrine for 2 1/2 years, and it helped me even after i stopped taking it for several more years. my doc said it kind of trains your blood vessels to constrict better, so the benefits last even after the drug is withdrawn. i did have a lot of side effects and had to stop due to that. it doesn't cure POTS; there are other symptoms that linger and it doesn't address everything. but it worked great for me in terms of getting rid of the dizziness and some of the cognitive problems. btw, about lying down, i had asked my doc when i read that bit in the pamphlet and he said not to worry at all, that it's a concern for parkinson's patients but not for a patient with my case. i took it and lied down plenty of times without any problem.
  14. If ur going to Newport, VA, u might be able to head up a few hours to Fairfax/Sterling and see Dr. Abdullah's clinic. He and his team of cardiology doctors and nurses are almost exclusively treating Dysautonimia (esp POTS), and they rock in terms of understanding, empathizing, and keeping on the latest edge of what really works. At my last visit, my doctor told me that a recent review following up POTS patients who had pacemakers found they are not helpful for that group (don't know if ur problem would br different though, since it's brady rather than tachy for u). I had brady episodes that knocked me unconscious and unable to be roused (basically the definition of a comma, btw) when I was on Midodrine, until we cut my dose in half, then those episodes subsided for the most part. I never went to the ER bc there's nothing they can change about it and the drama is stressful, let alone the physical stress of the trip, the testing, the lights and the disturbance to my schedule (sleep, eating, etc.). Really useless. No, actually detrimental. For me, I only go to specialists who know my disease and can help me. Dr. Abdullah's office takes my calls all the way from another country (I live in KSA now), and gives me advice or tells me when it's time to come in. When I lived in VA,before i found my POTS doc, I found ER visits terribly futile. Even though my family freaked when I started refusing to go, they knew it was pointless to go too, just felt they "had to DO Something". now, if I know I need an IV, I bring a nurse to my home from a private clinic. If I don't know what to do, I start looking online for a specialist and make the nearest appt I can. Your case seems more severe though. Do these hospital admissions result in a good outcome for u? I mean, u get the right treatment? If u know u need hospitalization, u should advocate for urself, and is ur family is with u so should they. Maybe next time, bc u r sure to encounter plenty of ignorance about dysautonomia so I'm sure, unfortunately there will be a next time, try to stay cool and request to talk to another doctor, one who is familiar with Dysautonomia, or suggest they allow the neuro on call to evaluate. Self-advocacy is really important. U r also advocating for others with similar conditions when u insist u have the right to appropriate and timely care, which is simply the duty of any physician to comply.
  • Create New...