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jbenz1772

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Everything posted by jbenz1772

  1. Angela, Have you spoken with an interventional neuroradiologist? There is a procedure called sclerotherapy where they inject a sclerosing agent and the internal surfaces of the malformation burn and scar down, inhibiting the pooling of the blood. I'm assuming the malformation is intracranial? Not sure where you are located, but Froedert Hospital in Milwaukee, Dr Zadat is excellent or would be able to refer you to someone in your area. Good Luck, Jennifer POTS Small Fiber Autonomic Neuropathy
  2. I've never had the testing, nor did I realize there were any for the "brain fog" issues. It seems to come and go with my flare ups, and those days I usually just call a bad brain day. It ranges from disorientation, stuttering, word finding issues, to um...staring into space trying to make sense of what is being said to me. Just started a new job, in a leadership position. Try explaining the stupid look on my face, or the frustration trying to find a word that I should know but won't come to me....just say "sorry, brain issues today" Jennifer Small Fiber Autonomic Neuropathy POTS
  3. I was seeing Dr Peltier as well at Froedert. Then she called and said she was moving more towards pain management and recommend I see Dr Chelimsky and he was specializing in Automonic Disorders. Unfortunately before I got the chance to make an appointment, (or rather fortunate) I took a new job and moved to Orlando. Seeing I'm one of the few that tolerate heat better than cold, Dr Peltier thought the move would benefit me. Except for the freaking air conditioning I'm doing fairly well and looking for a neurologist in the Orlando area. So if anyone has any recommendations for down here I'd be grateful since I'm due for a tune up. If I were still up there in MIlwaukee I would have followed up with Dr Chelimsky. Good Luck! Jennifer Milwaukee transplanted to Orlando POTS Small Fiber Autonomic Neuropathy
  4. I also seem to do worse in the cold than the heat. For years before diagnosis my husband always made fun of me for always being cold. Always covered in blankets. He'd always joke..."you need to see a dr..there's something wrong with you" I just always thought I was just cold. HMM guess there was something wrong with me. I'm not faring so well in this season change either. The last week or so has been hard. Jen
  5. It is my understanding that my POTS is a result of my SFN. And my SFN is idiopathic. I didn't really get a whole lot of explaination from the neurologist. She just put me on meds for the symptoms and told me to stay away from stress. I see her every 3 months to see if they are helping.(unless she cancels due to meetings.) I just coast. Most of my info I get from this board. Since our last appt, the digestive stuff(which I thought I wasn't going to have) have gone into hyperdrive and I want to talk to the dr about mestinon. Seems to me stress and hormones are my biggest triggors. I get burning, icy-hot feelings in my feet and legs, numbness/tingling in my right hand and fingers. Muscle twitching in upper arm and thighs,leg cramping and pain which is now happening in my gut(bizarre),constipation until my period, then diarrhea and nausea, also get chest pain. This is in addition to the POTS stuff, tachycardia, syncope, migraine aura. ChristyD, My sweat test revealed complete sweat loss from the waist down and 40% from the waist up. I only sweat on my wrists and my hair line above my forehead. Funny I have a harder time in the cold weather than the hot. Jennifer
  6. Enko, I've told my neuro POTS dr. a few times about the hives. She didn't have a response nor concern over them. Jen
  7. I too get hives. Sometimes more than others, I can go a week or so without. But mine can be anywhere, but the most annoying is on the palms of my hands or soles of the feet. But most often get them on my arms and sometimes on my face. Once I got into a heated conversation with my boss about a suboptimal coworker and into the conversation started to scratch and realized I had them all the way up my arms. For me it may be an adrenaline release. But the hands and feet I usually wake up with. I can't really relate it to anything.
  8. I too can be added to the list. I had minor constipation every month until about 2 days before period when I would completely clean out naturally probably from the hormones. In the last couple of months the constipation has been causing significant pains about an extra 5lb weight gain because I haven't gone to the bathroom. I talked to my neuro yesterday, and I am going to try Miralax until my appointment with her next Thursday. Then I believe we are going to discuss Mestinon. So I guess we'll see. Jen POTS, Small Fiber Autonomic Neuropathy, aura migraines midodrine, propranolol, lexapro, torodol
  9. Dino, I have POTS and Small fiber autonomic neuropathy too. I had true migraines early on when going through puberty, but over the last year and a half I had what my neuro calls "complicated migraines". I too have not much in the pain category(mostly on the right side of my neck, behind right eye), but have all the aura symptoms. Mostly the right eye visual disturbances, but also the cognitive impairment, and stroke like symptoms(right sided weakness, tingling and numbness). Since my diagnosis in January my neuro put me on propranolol and midodrine and I've really only had a handful of migraines. Jen
  10. Lizababy, Reading your post really put words to how I feel sometimes. I get that group setting feeling too, where I start to feel sick from the trying to concentrate through the noise and such. Sometimes I just can't do restaurants or family/friend get togethers. And when my mom starts snapping pictures watch out, I have to go into a room by myself. Jen
  11. Hmmm choices..choices. I'd probably go with the fatigue. But I realize that most the time I'm mentally exhausted from trying to mentally push through the dizziness. Then there are the days that I could totally give up the muscle cramps/twitching/pain. Jen
  12. Hi, I voted other for triggor. I have small fiber neuropathy that my neuro believes is the cause of my POTS. But the SFN is of unknown etiology so far. Jennifer
  13. Hi Naomi, I was confirmed with the small fiber neuropathy and POTS with my neurologist through other tests rather than the biopsy. I had a thermoregulatory sweat test, which was very humbling in a disposable bathing suit. And yes, they take pictures. And the QSRT test as well as the TTT. All were positive. My neurologist said most the time SFN is idiopathic with no explaination for onset. Very frustrating. But mine is complete from the waist down and 40% from the waist up. The neurologist that read out the results said the POTS is because of my extreme lower extremity involvement. So mine is mostly muscular twitching, tremors and pain in my feet and legs and right fingers/hand and left upper arm. As well as the shortness of breath, chest pain, dizziness and brain fog. Hope you find your answers! Good luck! Jennifer
  14. I get the shower/leg burning sensation too. But I'll get burning in my feet where it feels like I'm walking with sand in my shoes, when that happens it usually moves up my legs and then get muscle cramps really bad. Have needed help getting out the car before when that's happened. I also get the pins/needles feeling and what I call the icy/hot effect. This is where it feels like someone just slathered on a clump of icy/hot onto a random area on my skin. I too have the dead leg/foot or arm feeling. Usually worse when I'm tachy. Jennifer
  15. Alicia, I have had the same teeth chattering...all over body tremors a handful of times. It seemed to come on with stress as well or after an exhausting day. Once I just walked over to next door neighbor for a visit and all I did was walk in the kitchen and it hit. I held onto the counter while the shivers turned into tremors. A few weeks back my boss asked me if I would consider relocating and the stress hit and immediately my eye started twitching then my arms and I ended up in the bathroom crying(mostly from embarrassment and lack of control) This disease does stink. I've learned not to fight it, lay down and let it run its course. Jennifer
  16. I can be added to the clumsy list as well. I am constantly misjudging doorways, corners, tables and such. I have complicated migraines associated with my POTS/ small fiber neuropathy that mostly affects my right eye. So the majority of my bruises are on my right side of my body. Sometimes I even walk on a diagnal. Ha, and I used to be a dancer. Not very graceful anymore! Jen
  17. MomtoG- I work in Angio in pediatrics. I've been in medicine for 19yrs. Was diagnosed in January but have gradually been getting symptoms, starting with syncope during my sons football games (excitement) 5 yrs ago. I was diagnosed in the Adult hospital in our complex. My sister knows someone who worked at that adult hospital who's now on disability with dysautonomia and pots. He told her they've had 5 recent diagnoses of POTS/dys throughout the complex. HMMMMMM. Could it be some sort of chemical? Jennifer small fiber neuropathy/POTS
  18. Hi, Just wondering how everything is going. I just read your post today and hope the PICC went well. I have two perspectives of these. One is that I work in Interventional Radiology and place these on children. Usually very quick and the kids love them because "no more pokes". Second, my son has a heart defect and had a blood infection so needed one for antibiotics to clear up. He was able to do it quickly with no medication and was home that day. As it was between his elbow and shoulder in the inner arm he was able to do everything right up to playing soccer. He even took showers. Best thing is Glad Press n Seal with a rubber band above it and one below it. Works great. Just don't emurse totally in water. Also one more quick thing. There was a comment about a broken PICC causing a stroke? Unless the patient had a heart defect that caused blood to cross from venous to atrial this can't happen. A PICC (peripherally inserted central catheter) is in a vein. We've had to retrieve broken piccs in our lab. (very rare). But they usually end up pulmonary not in the head. More benefits than risks to a PICC. Best of luck, Jennifer
  19. I notice many of you have noted stress as a triggor. My neuro asked me to start a journal as far as symptoms and when they start(what I'm doing, time of day, how I feel). She actually wanted me to take a leave of abscence to figure things out and straighten out my medications. I'm too attached to my job to take a leave, I think I would be more stressed out at home worrying what's going on at work. Most days I just go into the restroom to take deep breaths and sometimes cry if the pain gets too bad. I tend to take on a limp on the worst of it. I do work in a high stress area of a pediatric hospital. I was doing pretty good and at some times wondering if it was"going away"...ya right. That was until my Doctor asked if I would be willing to move because he may be relocating. Since he started.. what we do has been more involved, high tech, exciting and a lot more satisfying. At that moment my eyelid started going a million miles a minute, almost started crying and shaking. I've been in a flare up since then.(a week ago). Havent been able to get my blood pressure under control, eye twitch, some tremors, muscle cramps and sharp pains up my legs.Couldn't even get out of bed on July 4th. This has led me to really believe in the stress component. Needless to say although considering moving at some point, knowing full well my husband and family wouldn't be willing to move. So what do you all do the relieve your stress or try to lessen the effects when it hits?? Jennifer
  20. Wow, It's like reading about myself when I read all these posts. I too have the muscle twitching and intense pain(not always together). It's usually my left eyelid and my upper arms and upper legs that twitch. A couple times it was my thumb or fingers. And weird when you can actually see the spasms. A handful of times I had complete body tremors, which started like I was chattering from cold with shivers but wasn't cold and then progressed until I had no control over my entire body in shakes. I also getting shooting ice pick feelings from my toes up my legs. Other times its such bad muscle cramps you can feel every muscle in my leg tightened up. Once I was in the grocery store with my daughter and felt my calves cramp and my feet hurt like I was walking with sand in my shoes then the limp starts and I get anxious. By the time I got to the car my lower half from waist down was cramping, sat there for a while and my husband wanted to come get us. I proceeded to drive home and crying the whole way. By the time I hit the driveway I was in full blown sobs and my husband ran to get the neighbor(my best friend) to help me out of the car to the garage. My BP at that time was 90/50. You'd think with my state it would have been through the roof. These things tend to happen to me when my pressure drops. Anyone else seem to have correlations to their BP??? Jennifer
  21. Just wondering if anyone out there has a persistent eyelid twitch. It does seem to get worse with an aura but is there reguardless about 85% if the time.....always.... I know it does get worse as does my pots with stress. And when I notice it gone I have a sense of relief for a bit of a time. I also get muscle twitches in my upper arms and upper legs. Have a handful of times had full body tremors or complete lower body muscle cramps that left me in tears unable to move. Does anyone else have the eyelid twitch and have any suggestions to make it go away or lessen at all. It is driving me insane!!! Thanks, Jennifer
  22. 1. Dizzy/near syncope 2. burning pain in toes, feet shootin up legs 3. Muscle twitching/cramping 4. Headaches/Aura/concentration/mood swings 5. fatige/ sleep problems tied for 5th= increased symptoms starting 4 days before period to include Lower GI problems.
  23. I dont sweat either. Yesterday was terrible. First hot day this year. Was outside for a total of ten minutes. Not a drop of sweat on me. My sitting heart rate 125, all I did was stand up and went well over 160. Needless to say went inside and took a nap. Ugh!
  24. Hi K's mom, I'm sending hugs your way. I can't imagine how hard it is for you to try to be there for your daughter. I'm the one with Dys/POTS/small fiber neuropathy and know how it feels like whatever you do nothing seems to work. I agree about the support group. Does your local children's hospital have any programs? My son was born with a genetic syndrome called 22Q11 and our genetics department is great with having outings to meet the other kids and parents. Sunday was international awareness day at zoo's across the world. It's so nice to be able to talk to others going through the same thing. I know the hospital I'm treated at has monthly support groups for dysautonomia, I just haven't gotten myself to one yet. Good luck and your not alone, Jennifer
  25. Hi Naomi, I get the same thing. It is mostly worse at night, but can start anytime of the day. I have bouts of severe cramping and get the same parasthesia feelings like thankful.(the buzzing, cold patches(like icyhot feelings) I also attribute it to my small fiber neuropathy. Last thursday it started to hit at a quick trip to the grocery store. By the time I got home I was crying and my husband and neighbor had to help out of the car and get me to bed. Took a trazadone the pain and cramps were so bad. Then the following day my feet hurt so bad and it felt like I had a load of sand in my shoes. Jennifer
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