jbenz1772

So summer vacation in 4 wks away. I know I should be more worried about tolerating the travel and the heat. But I'm mostly planning on actually being "on vacation". I need time to do nothing, which for me is sitting by the pool and reading a book(as long as I can stay away from the migraines). However, since starting on all the meds in January I have gained almost 10 lbs. (sarcastically: apparently once you lower your heart rate into the "normal" range my metabolism has come to a complete halt. Anyone been on a diet? Just would be happier 5 lbs less in 4 weeks. Thoughts? Jennifer

Hi Naomi, I had several autonomic testing done. I had a QSART which hooks up to arm, foot, ankle and leg to test for sweat response as well as a thermoregulatory sweat test. That's a great one. You wear a disposable bathing suit, lay on table in hot room with orange powder on you while your temp rises. Once you reach 38 degrees celcius they take pics of you and study your sweat pattern.( I have complete sweat loss on lower half of body). As well as the vasovagal breathing test and Tilt table(which proved positive for POTS). Sallysblooms, I will be talking to the Dr. next week about the supplements. So far she doesn't have me on any. Jennifer

Lette, I'm technically not in Ireland, but I am Irish. My family homestead is in Dingle. My father has visited several times with all his cousins and have a picture of the soddy. I am starting to save so I can come and visit and experience Ireland. My father has Orthostatic intolerance, I have POTS and Small fiber neuropathy. S-pot, There are days that there's really nothing I can do to improve except make it through the day and get home to bed. I am on 10mg Midodrine 3 times a day, they just upped my propanolol to 20mg 2xday, and 1 tablet of lexapro at bedtime. I do feel better when I drink my gatorade and eat pretzles. I have been trying to monitor what I eat and how that makes me feel. Jennifer

Just want to feel normal again. My mom asks me whenever we talk "How do you feel today?" I've learned to say "okay today" or "I'm in a flare up". Followed by " Each day is a different adventure". I'm pretty new to this, even though I've had different symptoms for years, only to go into high gear since last summer, and diagnosed in January. I'm learning to try and figure out what are bad days and what are really bad days. Do you all feel different every day? I can have a tolerable to not so bad week, followed by something terrible. My husband says he knows when it's coming now. My leg trembling the other night woke him up, but not me. It's usually my numb arms that wake me. But today I went to the bathroom to cry at work because the pain was so bad. But I'm so afraid to give up work, that I'll never get back to baseline again. I called the Dr to explain that the propanolol addition has reduced the headaches, but I don't think the lexapro is helping with the neuropathy. That my days consist of work-then home to bed. The muscle twitching, (I'm sure everyone thinks I'm winking at them even though it's just my eyelid spasms)numbness, skin pain, hives, stabbing pain, aching fatigue. normal?? All of you with small fiber neuropathy....what can I expect??? Is your pain different each day?? What helps with the pain?? Has yours progressed over time? With my last appt with my neuro we talked about POTS, meds and stress, but didn't really go over the expectations of the small fiber neuropathy. Thank you all for sharing. This site really helps me feel less alone. Learning to cope, Jennifer

Woke up pretty sore today. Didn't go to the Dr. Pretty sure it's only a broken toe.Although I think I traumatized my daughter pretty good. She's also the one who found me passed out in the kitchen couple months ago. Just chalk it up to clumbsy and unbalance. Thanks for all your well wishes, Jennifer

So totally went down today. The entire flight of stairs rolling the whole way. Lost a perfectly good plate of food too. Sore all over, think I broke a toe.(at least with the SFN I can't really feel it). I'm sure I won't be so happy in the morning, but for now I just can't stop the chills. Not feverish, just keep breaking out in goosebumps with the skin crawl feeling. And my eye twitch has increased too. When will I catch a break? Jennifer

Good morning Tinks, I too get muscle twitching in my upper arm thigh, calf and eye. I haven't noticed mine having any correlation to having to pee though. Saw my neuro on Thurs and she said it may improve with putting me on Lexapro. I also have Small Fiber Autonomic Neuropathy and the Lexapro is suppose to help with the parasthesias and muscle twitching. Good day, Jennifer

As far as work, I do interventional radiology. Long story short, I wear lead most of the day, scrubbing in for surgical type cases that use live xray or u/s. Can be long days, but I absolutely love what I do and would be more stressed staying at home.

Sue, systolic blood pressure supine 20" 1min 3min 5min 10min 15min 124 113 116 122 120 118 122 Heart rate 59 91 86 88 90 92 106 They don't mention diastolic Jennifer

Hi all, I was diagnosed with POTS and started on Midodrine/gatorade/salt almost 6 weeks ago. Had my first official neuro appt post diagnosis today.She asked if I had any questions about the diagnosis since they just told me over the phone I had POTS and prescribed the Midodrine. She also talked briefly about the small fiber neuropathy and complicated migraines. I'm starting on a low dose of propanolol and after a few days without complications adding on Lexapro. She gave me the reports from my autonomic testing. Wondering if anyone out there can give me the normal verbage and help decipher what it's telling me. Interpretation: Findings were suggestive of mild-to-moderate sudomotor adrenergic dysfunction characterized by reduced sweating on TST and reduced q-sart response at one of four sites. Estimated anhidrosis:40%. There is near complete anhidrosis of both lower extremities from the inguinal regions down with relative hypohidrosis in the proximal arms and forearms, but preserved sweating over the chest and abdomen (light pattern.)Preserved q-sart responses in the lower extremities with diminished TST responce in the lower extremities would suggest preganglionic adrenergic dysfunction. Note that cardiovascular reflex testing was robustly normal. The tilt test was remarkable for POTS, Characterized by and increase in heart rate of 47 bpm over the course of the head up tilt. POTS has been described as neurogenic and non-neurogenic in nature, the latter representing volume depletion and the fromer representing a limited small fiber autonomic neuropathy, which is predominantly sympathei in nature and limited to lower extremities. That appears to be the case with this patient. Clinical correlation is required. So technical jargon aside. POTS with Small Fiber Neuropathy. Neuro would like me to take a small leave of absence from work to find the right combo of meds. LOVE my job, better at my job than being a mom or wife. Think it will stress me too much to be home. Thanks for all your knowledge and support. Jennifer

Hi K's mom, I'm not sure where you are located or what Children's Hospital you are going to for her issues, but if you are anywhere near Children's Hospital of Wisconsin. They have a multiple disciplinary musculo-skeletal team, that evaluates the entire situation. It consists of orthopedics, oncologist, interventional radiologist and the anesthesiologist would get involved. They evaluate the best way of treatment, be it surgery, or IGT( Imgage guided therapy) such as sclerotherapy of the bone tumor or Radiofrequency ablation. Both of which would have a quarter of the post op healing time as surgery. The anesthesiologist would plan out the best course of options for her comfort while weighing in the POTS. Good thoughts coming your way, hope you can find the answers you need ((hugs)) Jennifer

So so sorry you are going through this. Last August my oldest and youngest both came down with whooping cough, even with the booster. Hate to say it, but they call it the 100 day cough. My son 15yr old has asthma and it scarred his lungs so bad that they said it would take about a year to get back to baseline. It was the classic, cough, cough, hold breath, gag,(sometimes vomit) with a huge deep breath in. My daughter had more of the whoop sound than my son. He lost 30 lbs just from coughing so hard he vomited. My daughter had a garbage can next to her desk at school just for the coughing till gag and vomiting. They can do a nasal swab for the pertussis diagnosis early on. Then you have to go through the local health dept and let them know everyone you've been in close contact with. It's a pain, but it helps contain the disease. Half my sons football team came down with it. Then our whole family had to take a z-pack. Good luck with everything and get plenty of rest. Jennifer

Wondering who out there may be going through intermittent muscle twitching?? For me it is usually the thigh or upper arm,(sometimes the abdomen) but the last three weeks its been my upper left eye lid and it's driving me insane. I had this happen last summer for about a month that preceded one of my worst flare ups that led to my diagnosis. Is there anything that can stop this??? Thanks, Jennifer

Wow, been dealing with this weird chest full feeling, like I'm breathing around a large ball in my chest. Couldnt explain it to my husband. your hunger for air feeling is what it is. Out of breath, but can breathe, but not right. Feel not alone here. Thanks, Jennifer

So sorry to hear all that you are going through. I don't have any information reguarding the anesthesia, but I might have a suggestion for you to look into reguarding the osteochondromas. I work in Interventional Radiology at a Children's hospital and we are doing something called Radiofrequency Ablation. It shortens the recovery time significantly and reduced pain post procedure. One of our top ortho-onc surgeons is now recommending this for many of the cases. Just something to look into. Best of luck, Jennifer

Thank you all for such kind words and encouragement. Feel so lucky to have a place to go for help and others that understand. Jennifer

Hi all, I'm new at this, being diagnosed last month, but having symptoms for years. I guess I'm going to start keeping a diary/time line to queu me in on when I'm getting a flare up. Tuesday, had a major anxiety attack when I couldn't remember my work locker combination(That I've had for 13yrs). Wednesday woke up with severe migraine/neck pain and my HR was all over the place which continued into yesterday.My Neuro had me ramp the Midodrine up to 10mg 3 times a day. Hr from 45 to 150. Couldn't get it under control. Then diahreah last night to wake up at 4am with sever left lower pelvic pain and dehydrated feeling headach chest pain, and left arm pain. So to the ER we go. They gave me iv pain meds for the headache, checked me for neck issues and an ultrasound of my pelvis. So I won my self a ruptured cyst on my left ovary and a kiwi sized cyst on my right which I have to see my gyne next week about. I have heard that the POTS gets ramped up with the menstrual cycle. Is that what all you experience? Figuring I can add this on my list of triggers. Thanks for listening, Jennifer

Hi all, I was just wondering if anyone wore a heart rate monitor? The kind around the torso hooked to a watch. My HR seemed to be all over the place so my husband had me put on his HR watch. I called my Dr. to let her know that my HR is all over the place. In the afternoons it goes down to the 40's, but then this morning I woke up and it was 91, stand up and its 135, take shower and it's close to 150. It was hanging around 70 when I bent over to pick up a bag, blacked out, caught myself and it was 147. My bp's usually hang around 100/60, but go to 84/46 with a resting pulse of 90. So my Dr.'s response was to up the Midodrine. It just kinda freaks me out when my hr is in the 40's and 50's, makes my chest feel heavy. Scares the he** out of my husband too. Thoughts??? Thanks so much for all the support. Still trying to get things under control.

Tinks, I can't answer if it is from lack of blood, I can just tell you I get that same feeling quite often. Most often when I'm walking out in the cold, turn my head fast, or walking in the tunnel from the parking structure at work. I've just begun to shrug everything strange to the POTS. Best of luck, Jennifer

How Bizarre that you posted this today. My heart rate started to increase last night, woke up with my sleeping/supine pulse 91. Got up and started with a headache and neck pain(right sided). My heart rate was all over the place, bent down to pick up something off the floor and went from 80 to 147, started to black out, but caught myself. Then the cough started when I got to work. It's amazing how I got this cold or whatever it is overnight. Not to mention I'm 3 days away from period. Can you say "flare-up". I ache all over and just want to cry. So I call the neuro, and I'm told to up my dose on Midodrine. Hope you start feeling better and get the answers you need. Jennifer

Oh boy what a rough night. Last night my blood pressure and heart rate were all over the place. And I felt like extreme crap, and got my husband worried to the point he wanted to take me to the dr. My blood pressure ranged from 102/68 60bpm(laying) wake up to 84/48 with a pulse of 90(laying), 100/74 with a pulse of 58, and 117/70 with a pulse of 112(standing) walk up to bedroom and 108/74 124bpm. Most of the time my blood pressure monitor doesn't even register(I get an EE code) and can't even feel the pounding when the cuff is up. Thinking the bp is too low. I've been on Midodrine for a little over a week and am up to 5mg 3 times a day, and it doesn't seem like my bp is affected by it. Wake up in the middle of the night with the feeling like I'm going to have to go to the bathroom. My arms were completely asleep all night long. Drank a big glass of water which seemed to help with the anxiety feeling in my chest. I would just like to get an idea if this is just "normal" for POTS? (I've only been diagnosed for 2wks, but symptoms for probably about 6yrs, that really ramped up out of control since August.) Where do your BP's and heart rates sit at? Thanks, Jennifer

Hi all, Still trying to get a handle on what is POTS and what is not!?! I frequently have 2 different gaits. One is a limp that comes on with the numbness in my right leg from knee down. My parasthesia's usually start as an "icy/hot" feeling on patches of my skin. 50% of the time where that feeling start turns into muscle twitches or cramps then numbness. Kind of feels like I have a thick 2nd skin/glove over my arm or leg. My second gait is more of a both legs feel heavy and exhausted just trying to get myself to my destination walk. Also do any of you wake up with your arms completely asleep? This happens to me several times a night during a "flare-up". Which to say the least is most nights. Like I need anything more to add to my fatigue. Thanks, Jennifer

Mine is a "foggy" walking in a tunnell that is closing in on me that makes me feel faint.

I'm sure you've all been there. Freaked out by the diagnosis, but relieved you finally have one. So I officially have POTS, dysautonomia. I'm starting on Midodrine today and then after I've been on it a while she is going to introduce a daily anti-migraine.(not sure which one) My symptoms have been: chest pain, pins and needles in right foot/ leg/ hand and arm.(almost restless feelings) Icy hot patchy feelings, muscle twitches(random spots, eye, left thigh, left upper arm), tachy(of course), migraines, aura, tunnel vision, dizzy, pre-syncope(fainted last month), shortness of breath(esp after shower and housework)flushing, wake several times a night with my arms completly asleep, mix up my words, brain fog Any words of wisdom will be graciously taken. Thanks, Jennifer

Thank you all for helping not feel so alone. My neuro's RN finally got back to me. She said the neuro has been really busy this week but she will call to go over "everything" with me. That given the testing last week, the cold/cough that started, migraine on Sat and starting my period, I'm having a "flare-up" of my "condition". To just drink fluids and get lots of rest this weekend. She seemed to be skirting around that the tests showed a diagnosis finally, but she has to wait for the Dr. to tell me herself. She should call next week sometime. Thanks for all your responses and I look forward to the help you all can be. Jennifer