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forevertired

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Posts posted by forevertired

  1. There are motility tests (for example: manometry http://www.biomed.ca...f/51/51_541.pdf) which are used to test whether your bowels have motility issues. My POTS doctor says there are a number of gastrointestinal disorders that can be caused by autonomic nervous system problems. If you think your bowels work too slow or too fast, you can perhaps ask your doctor if he/she would schedule you to have bowel motility testing done. I have not had these as the gastroenterologist said I did not need them as it was obvious my bowels move way too slow. I would still like to have at least the small bowel manometry. I had a small bowel follow through, which I was told takes most people 1.5 hrs, it took me 6.5 hrs. It also took 4 days the barium left my system (and that was with the use of colonoscopy prep laxatives). I was told that the barium usually is out of your system in about 2 days. I had a colonoscopy to check for crohn's and the doctor said that my bowels were contracting weakly which he says is causing my severe constipation, severe abdominal pain and nausea.

    When I saw my POTs doctor (which was before I saw the gastroenterologist) and told him of my abdominal issues, he suggested that I might have pseudo-obstruction. He said because the autonomic nervous system controls the bowels, it is possible that sometimes, it can cause those nerves not to work right, causing a pseudo-obstruction which are episodic in nature and are hard to see because there is no mechanical damage.

  2. Your best bet is to be referred to a geneticist. The geneticist would test you for it. If you think you have type 3 some rheumatologists and pain doctors can do the testing for that type, but for the other types I believe the only people that can truly diagnose you with those forms are geneticists.

  3. She is on Neurontin for the headaches, and Florinef.

    She has had extensive neuro workups from two different neuro groups (including a movement specialist -- Dr. Abbie Collins, who really determined nothing), including MRI's, and nothing found. We originally started down the neuro path as her symptoms all began the day after she hit her head. The full body stuff actually started just as very mild tremor, which was still very concerning to us as that was NOT normal for her.

    She's completely 'with it' through these episodes, no spacing out, can't prevent them, and they last around 10-20 minutes. They seem to often be triggered by feeling cold (sort of like a shiver gone crazy!). No pain with them, other than if she smacks her heel down too hard or something similar. She's very hot and sweaty and tired afterward -- total body workout!

    "My Parkinson's-like neurotransmitter disorder is the cause behind my myoclonus, my tremors, my dystonia, and my POTS." -- so tell me more about this, if you don't mind. How was this determined? Testing? Doctor?

    Thanks so much!

    Debbie

    Glad to hear she has been seen by neurologists. Sorry to hear she is going through so much. I also experience the shivering gone crazy, I find the best way to stop that is to get warmed up, such as being wrapped in many blankets. When I get just the slightest bit cold, even if I shouldn't be, my full body starts shaking like crazy (shivering), and my teeth chatter, and my breath is affected too. Its almost like I am hypothermic (i.e. sympathetic nervous system excitation). I somewhat blame this on my dysautonomia because its like my body can't properly regulate temperature. I figured the shivering was due to my dysautonomia setting off my tremors and other movement disorders.

    Does she still see a neurologist? Was she having the spasming when you saw the neurologists? Have they ever seen it? For example, my doctors weren't able to diagnose one of my movement disorders until I got it on video, as it never happened in their presence. I have never caught my shivering on tape, and most of my doctors when I explain it to them, have no idea what it is, or what the cause is. It is entirely possible your daughter is like me where our bodies don't seem to regulate temperature well, and the change in temperature, or simply being cold, sets off our sympathetic nervous system, which could just be due to her dysautonomia. If she shakes all the time, as in the tremor never goes away (for example if every time she moves her hands shake), or every time she rests, her body shakes, then it is most likely something else, other than bad temperature regulation causing her to shake.

    I have seen neurologists most of my life. I started off with an essential tremor in the hands when I was about 8, that eventually moved to my whole body. Then I developed jerking and shivering. Then muscle spasms, then POTS, and then the spasmodic dysphonia when I was 22. I have had all types of testing, such as blood/urine tests for heavy metals, MRI's of brain and spine, thryoid tests, etc... My doctor's were willing to blame a birth trauma for all of my issues, since I was born a month early. They labeled all of my movement disorders, such as polyminimyoclonus, essential tremor, etc...Even though as I got older I developed more and more problems, they kept dismissing my issues. It wasn't until I was diagnosed with POTS that my movement disorder doctor was finally willing to look into a cause, as he said POTS can not be caused by a birth trauma. He said because of my wide-range of problems, and because my spine and brain MRI's were normal, that it is most likely a neuro-transmitter disorder. A lot of my symptoms are similar to parkinsons. The tremor, the myoclonus, the rigidity, my problems walking, my dystonia, my speech and swallowing issues, my stomach problems, my dysautonomia, so he tried me on carbidopa-levodopa which is used to treat a dopamine neurotransmitter disorder, as a test to see if that was the type I had. Carbidopa-levodopa has helped my walking and my jerking considerably. He says I don't have parkinson's as my symptoms are progressing too "slowly" to be parkinsons. So he says it is parkinson's like. He says since the carbidopa-levodopa has helped me, I most likely do have a neuro-transmitter disorder like he is thinking.

    A Ear, nose, and throat doctor stuck a camera down my nose, and thats how I was diagnosed with spasmodic dysphonia.

    Some testing he is going to do to prove it are, a DAT scan which is a special type of imagining for parkinsons, a lumbar puncture that specifically tests for neurotransmitter disorders, and a special EEG type test that measures my movements which will help him better determine if he diagnosed my movement disorders (like my polyminimyoclonus) right. He is also sending me to a neuro-geneticist for testing, as my grandmother has parkinsons, my mom has POTS, and my dad has an essential tremor, to see if I have genetic reason behind my neurotransmitter disorder.

    Did they put a name to the type of tremor she has? For example: essential, chorea, polyminimyoclonus? Does the tremor only happen when she moves or when she rests does she still continue to shake? Or does it only happen when she's cold? For example with an essential tremor, it is noticeable when someone writes, or drinks, or eats, but if they have their hands resting, their hands don't shake.

  4. Does anyone else experience the full body spasms/twitching that my daughter deals with? We believe it's part of the whole POTS/dysautonomia thing, but would love to hear from others as well. Her POTS cardio has never seen this.

    Our concern is that they are escalating in their intensity, and we don't want her to hurt herself involuntarily, while thrashing around!

    Curious about others' experiences with this, and what has helped.

    Thanks!

    Debbie

    Has your daughter seen a neurologist? It might be worthwhile, especially if the spasms are getting worse, if she hasn't, to take her to one (with a videotape of the spasms if they don't occur all the time), just to rule out any neurological causes of the spasms. Did the spasms start before or after she developed POTS? Have you discovered the cause of your daughter's POTS?

    Does she fall when she has these spasms? Do they cause her pain? Does her head hurt when she has these spasms? Does she experience any cognitive issues, like memory loss when they happen? Do you have a family history of movement disorders? Do they last for long periods of time? Do they only happen intermittently (like once a day)? Is there anything that makes them happen? Can she prevent the spasms from happening, even if only for a minute or two?

    For example, I have full body twitches (from my myoclonus), spasms (from my dystonia) and, tremors, and even though I have POTS, they are not caused by my POTS. My Parkinson's-like neurotransmitter disorder is the cause behind my myoclonus, my tremors, my dystonia, and my POTS.

  5. Maybe I'm feeling this the wrong way, but since I said I feel mine is due to de-conditioning, I feel like people think I'm trying to explain everyone's inability to climb stairs as nothing but de-conditioning. I'm not. I myself am de-conditioned after 6 years of not being able to physically do much due to POTS. In the beginning of my POTS, I would have been able to walk those steps and not be out of breath. I just would have had the racing heart and feel like fainting.

    Are no others de-conditioned after having POTS awhile?

    I do admit I am somewhat de-conditioned, especially when it comes to running, weight lifting, and other cardio exercises. I know that if my POTS just magically went away tomorrow, that I would not be able to go back to the amount of exercising I used to do. I do believe that everyone after a period of time (especially if it is years) of not doing something say lifting 50 lbs of weight or running 20 miles will become de-conditioned and will have to work back up to lifting that amount of weight and running that amount of miles, without hurting themselves. My only point is that I don't think my issue with stairs, steep hills, and carrying a backpack are related to de-conditioning, as I have been doing all of those things almost every day for most of my life, and still do those things, which leads me to believe those issues for me are not related to de-conditioning, simply because I have not stopped doing those things. Whereas I have stopped lifting 50 lbs, and have stopped running, and have stopped doing jumping jacks, and have stopped going to water aerobics. Because I have stopped doing those things, I am de-conditioned on those things. Yes, it was the fatigue and shortness of breath from POTS that initially caused me to stop doing those things, but I could have still have done some of the exercises I used to do without a lot of harship, maybe for a lesser amount of time, but still could have done it.

    I don't think anyone is arguing that they have or are becoming deconditioned over time, I think they are saying POTS is what caused them initially to have issues with certain things, such as stairs, that has lead to them becoming de-conditioned. However, they are saying it was not de-conditioning that caused them to initially have problems with stairs, however, now de-conditioning may be a part of their issues with stairs other than just the POTS. Your example of in the beginning of you having POTS and feeling like fainting when going up stairs, and then after a few years being out of breath when going up stairs is a good example of that. An example of mine I can state related to that is, that in the beginning before I got POTS, I used to walk a lot. When POTS and my other health problems flared for me it became extremely painful and hard to walk farther than a short distance due to my parkinsons, my POTS symptoms were chest pain and shortness of breath, so I stopped walking as much. Now that I have my pain disorder under control and POTS somewhat under control, when I walk long distances, my legs will hurt, not because of my pain disorder, but because I am out of shape, from not having walked those distances in awhile.

    I'm sure if you were to ask, a number of people with POTS on this forum would probably be able to state something they have become de-conditioned doing, even if it is not going up stairs.

  6. I have problems with stairs too. For most of my life I have gone up stairs almost everyday, as I have always lived in a 2 story home, my job is on the 2nd floor, and in school my classes were on different floors. When I developed POTS, I suddenly had a problem where I would be out of breath going up stairs, I would feel palpitations, and I would become quite fatigued, which didn't make sense to me, as I have gone up stairs almost every day of my life for many years. I knew it was not deconditioning, as how could it be deconditioning if I had been doing it almost every day before, and still do it everyday?

    I have found that since I have developed POTS I become out of breath and can feel my heart beat if I carry heavy things. Also, Jumping jacks and any other form of strenous exercise, cause me to be out of breath, have chest pain, and feel like I am going to faint. I don't think this is do to deconditioning either, as before I developed POTS I was riding over 30 miles a day on my bicycle, and doing several exercise programs. I also find it hard to go up steep hills, as that causes me to be short of breath.

    That is not to say, that now I am not out of shape in some regards. I admit I am especially when it comes to cardio exercises, just that in the beginning these symptoms could not be caused by deconditioning. Also, since I still go up stairs everyday, even though it causes my POTS to flare, I don't think my being out of breath when going up stairs, is caused by deconditioning.

  7. The "losing time" does not seem to be a symptom tied to POTS, at least not from my research on POTS. It sounds like he is having seizures. It could be possible he does have POTS too, although I wouldn't blame his "losing time" on POTS. Is your sister going to have your son do a tilt table test? It has been known for some people who have epilepsy to have a normal EEG simply because they had the EEG when they weren't having a seizure.

    How did the doctors induce the seizures in your sister?

    I have episodes of "losing time". It usually only 30 seconds to a minute or so, but it is long enough that I can tell time has changed, but I don't remember what happened in between. The EEG I had in the past was normal. I have a lot of other neurological disorders, so I am more inclined to believe that my episodes of losing time are being caused by something else, rather than my POTS.

  8. Tachyfor 50years:

    I am afraid I don't. I also don't know which medical conditions where that would be required. I know that CA is one, as I remember a case where a person was fired because of their health, and it came out that the person was legally required to notify the company of his health condition before being hired. I believe it was related to safety issues. I also know that when I lived in CA, I was told when I took certain meds, that I was supposed to tell my employer, if I had a job that required me to operate heavy machinery, that I was taking those meds. Also, in CA, if you have epilepsy you are not allowed to drive, which I imagine that if the state took away your drivers license because of it, and your job required you to drive, that you would probably have to tell your employer why you lost your drivers license.

    I do know most states require that if you have hepatitis or HIV that you are legally required to tell your employer if you work in the food industry or in health industry (like if you are a nurse). There was recently a case in WI where it came out a bus boy had hep A, and the restaurant was required to notify all customers that they had a bus boy on staff, during the years he worked, that had hep A.

    Some of the jobs I had in CA required me to have a physical and blood/urine tests before I could be hired. For one of the jobs if I had certain eye conditions or sleep disorders I would not have been hired.

    The basic concept is this, is if your medical condition can potentially cause harm to another you are required in some states to notify your employer, so they can best determine the liability you will have on their company. For example if you have hepatitis A or B, most restaurants will probably not want you being their chef or server, as it opens up a liability if their customers get it from their restaurant. Some restaurants will still hire you even if you state it, because they know ahead of time you have it and know how to deal with you having it; whereas if you have it, hide it, and then someone gets infected...

    Another example is this, in CA at least, if you have narcolepsy you are legally required to tell your employer if you have a job where by you having narcolepsy can potentially be harmful to others. For example a teacher was recently fired for having narcolepsy because it was ruled she could not adequately watch out for children, if she fell asleep on the job.

    For example if you work in the sex industry and you have a sexually transmitted disease you are legally required to notify all parties involved (i.e. your employer and sexual partner for the event) of you having that disease. I think this is a federal law.

    In my opinion I don't think dysautonomia falls into a medical condition that can cause harm to another in most jobs. Unless you are like an airline pilot and you have episodes of fainting when sitting, then it might be best do discuss that with your employer. If your dysautonomia was caused by hepatitis or another infectious disease then you may be required to notify your employer of it.

    But like I said, I ended up having to tell my boss, not because I was legally required to do so, but because my dysautonomia and other medical conditions had made it so that for a period of time I could not do the job I was hired for.

    Please note I am not a lawyer. If you are concerned you might have a health problem that interferes with your work and/or could potentially cause harm to others, I suggest you ask a disability services charity, your doctor, or some law group if you would have to disclose that information.

  9. I ended up telling my boss, even though I was fairly new to the job, because when I first got really sick, it interfered with some of the duties of my job and I was going to several different doctors every week. I still go to the doctor's quite often for someone my age, and unfortunately most of my doctor's only have appointments from 8-5 which requires me taking time off work.

    I do agree with the others, it all depends on your boss. I had to tell my boss, because my health wouldn't allow me to do some of my duties. I was afraid I would get fired (I live in an at-will state), but there was no way around it. My boss has been really good about it, and has allowed me to do other tasks rather than the ones that I can't do because of my health.

    If you think your boss would be cool about it, then go for it. If it has been affecting your work, it might be better to tell your boss, rather than have your boss fire you because your boss thinks your work is affected because of other reasons (such as you being lazy).

    I do know that in some states you are legally required to tell your boss if you have certain medical conditions and/or take certain types of medications. For example in some states you have to tell your employer if you are taking narcotic pain meds if you work in a heavy machinery type job. Or if you have epilepsy and you are a forklift driver...

    We_don't_look_sick: I think you would be protected under American's with disabilities because you have a pacemaker. I imagine your doctor would know, you could also discretely ask HR. For example: you could say it in this way, "If I was diagnosed with x, would I be protected?". That's how I asked about my company's policy toward women who get pregnant, as some companies will fire you for getting pregnant. You could probably also ask a local charity that helps people with disabilities find jobs, as to what if any rights you have.

  10. Have you seen a neurologist? If you are concerned about possibly having seizures, it might be beneficial to see a neurologist, to know for sure whether you are or not. The neurologist would possibly also be able to prescribe a medication that could help with your muscle twitches, if those bother you.

    I am not a doctor, but I have been told that some people with epilepsy have normal EEGs. This is sometimes because they have the EEG when they are not having seizure-like episodes.

    I see a movement disorder doctor (a type of neurologist) for my muscle twitches, jerks, and tremors. My POTS is tied in with my movement disorders, thus my treatment for my movement disorders has helped my POTS a bit.

  11. If I may ask, ChristyD, POTSGirl, ramakentesh, rachel, and allaboutpeace:

    How did you get your doctor to prescribe Saline IV as a treatment? What made them suggest it as a treatment (for example they thought it would help with low blood pressure)? Does your insurance cover it?

  12. When I did the poor man's tilt table test it did not show I had postural orthostatic tachycardia. It wasn't until I did the regular tilt table test, that it showed I had postural orthostatic tachycardia. In other words I think it is very possible she has POTS, even though it doesn't seem like it from the poor man's tilt table. It is also possible she has a different form of dysautonomia. Either way it sounds like it would be worthwhile to have her do autonomic testing.

  13. I was diagnosed with CFS 7 years ago. I have never been treated for it. The only comment I got from my doctor, was that he was surprised I graduated from College. I graduated 3 years after being diagnosed with CFS and Fibromyalgia. My symptoms are chronic fatigue, low grade fever, chronic sore throat, muscle weakness, hair loss, eye pain, tinnitus, alcohol intolerance, difficulty swallowing, parasthesias, propioception difficulties, emotional lability, brain fog/ memory problems, chronic muscoskeletal pain, sleep problems, gastrointestinal issues, sensitivities to medications, temperature dysregulation/intolerance, breathing issues, orthostatic intolerance, POTS, and chest pain.

    I do not know if the diagnosis of CFS is correct, as no other doctors, I have seen since then have even suggested it as a possible cause of my symptoms. I was diagnosed with Fibromyalgia with the trigger point test. I have also, never told any other doctors about the diagnosis of CFS and Fibromyalgia, due to not wanting to be dismissed about my symptoms. Most of my doctors nowadays seem to think most of my issues are neurological in nature, and are most likely caused by a neurotransmitter disorder similar to Parkinsons.

  14. Has anyone else felt that their emotions have an affect on their POTS symptoms? If so, is it only strong emotions that affect it? What emotions do you feel affects your symptoms? What symptoms do they make worse?

    I have found that when I get really sad, my chest pain gets worse, and when I get really upset my breathing gets worse.

  15. I haven't even attempted a warm bath because warm showers make my breathing worse. I literally have to take a shower laying down in the tub because standing with the heat is bad. On the opposite end - The cold weather seems to make me flare and my breathing worse while the warm 70-80 degree weather seems like the best for me. In the cold weather I have to bundle up and that makes me hot and sweaty and makes me flare...

    I have the same problem. When its too cold out, (less than 70 degrees) my pain and shortness of breath get worse. I also shiver like I am hypothermic when it is cold out, and my movements disorders are worse. I end up bundling up in layers of clothing, but then I sweat a lot, and the temperature changes from going inside to outside to inside are rough on me, as I am still cold when outside, but then too hot when inside. When it is too hot out, my fatigue and shortness of breath get worse. I am best POTS wise when the temperature is in the mid 70s.

    I love hot showers and hot baths. They help considerably with my muscle pain and relax me. However unfortunately, my chest hurts, it can be hard to breathe, I feel palpitations, and get really fatigued from the heat. I hate that POTS has taken that from me. I still take baths occasionally, but it is usually with a cooler temperature than I used too, and for a shorter length of time. I avoid hot tubs now, as I can only tolerate them for a few minutes before I have to get out. Even though my POTs gets worse with hot showers, I still take hot showers, as anything cooler than hot, causes my entire body to shiver and my teeth to chatter.

  16. Forevertired,

    Sorry, I wanted to quote this line " Does your blood pressure range a lot, like mine does? Or does it only range within about 15 points (like 115/70 to 130/80 for example)?" so it would call your attention to the answer, but I cannot figure out how to quote part of a section, ( tried highlighting it and hitting quote-maybe someone can tell me)

    Anyways, generally my BP is high. Off meds it was all higher than 135 systolic and 85 diastolic, it bounces in the opposite direction of the HR, but stays over those numbers. On Propranolol 140 a day ( 80LA AM & 60LA PM ) it goes a little lower, and now with 75 of Losartan on board it seems to go to a lowest of 110 Systolic and 73 Diastolic- standing, but still fluctuates.

    Off topic but did they come up with something to help you sleep?

    Unfortunately, I have not yet found a doctor willing to prescribe me anything to help me sleep. I am hoping that once I get to see one of the ANS doctors at UW Med center, that they will be willing to prescribe me something.

  17. My blood pressure ranges a lot i.e. greater than 25/20 points a day (i.e. 117/67 to 144/90). I was curious if any other people with POTS have a wide range of blood pressure variability too? If so, have you gotten an explanation or diagnosis for the wide blood pressure ranges? Was it explained/diagnosed as being due to your POTS?

  18. I am not sure if my cognitive issues started before or at the same time as my gastric issues. I have had cognitive issues since I was a child but that was always blamed on depression. The cognitive issues got worse when I started college, even though my depression was under control. Around that same time, I started having stomach/bowel problems, chronic pain, and chronic fatigue. Shortly after that I started having chest pain and shortness of breath. The chest pain and shortness of breath only happened a couple times a year, whereas the fatigue, muscular pain, cognitive issues and gastro problems were constant year round. Now I experience chest pain and breathing issues every day.

  19. Forevertired,

    Thanks for weighing in. You have the high HR like me. If you don't mind my asking what about your BP on standing off meds, or on tilt? ( Up, down, about the same ?)

    best,

    My blood pressure on the tilt table test when laying down ranged from 117/70 to 144/90. When standing up during the tilt table it went up then came down a little bit, but was still in the range of pre-hypertensive/ low hypertension. It came down to the mid 120s. I was only standing during the tilt table test for a little more than 5 minutes, so I don't know if it would have fallen more, or went back up. When I am sitting it ranges from below 120/80 (like 110/67) to the high 130's/80s. I have not measured it standing up. I have not yet tried any meds for my blood pressure/heart rate other than florinef. I did not have my blood pressure monitored when on florinef. Does your blood pressure range a lot, like mine does? Or does it only range within about 15 points (like 115/70 to 130/80 for example)?

    I know that when I go from standing up to laying down, I often feel palpitations and have problems breathing. Especially if I get up from laying down, then go back to laying down shortly after, like when getting up to turn off an alarm (I tend to lay down for a bit after doing that before getting ready for the day). I should probably buy an at home blood pressure monitor to see what my blood pressure is when that happens.

  20. Jen LR,

    I am surprised they measure your B-12 every week. If I may ask, why do they measure it every week? I usually get mine measured every 6 months or so, just to verify that the amount of B-12 I am taking is still correct for me.

    I take B-12 shots once a week. I am like you in that I don't notice much of a change in the way I feel. In other words, if I forget to take my shot for a week or two, I can definitely feel that I need a shot as I get really lethargic, but the shot does not do much other than make me less lethargic. I am always surprised when people say that B-12 makes them feel way better, as it doesn't do that for me.

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