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jjb

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Everything posted by jjb

  1. I was going to post about this too. After I gave birth five years ago, I had trouble with my hands and feet getting very hot during sleep hours. A year or so ago I began having lots of numbness, tingling and pain from my shoulders down during sleep hours. Now the numbness, tingling and pain is just in my hands at night time, but I am getting it more during the day. I am getting more pooling than ever in both hands and feet. I recently noticed my feet are not sweating. I am a bit concerned this is part of small fiber neuropathy.
  2. I used to have significant issues with ortho hypotension along w/ POTS. When I got preg with my daughter my BP was very labile. I'd get some pretty high highs. After my daughter was born my BP dropped to 50 something/30 something and stayed low for a while. Now it is pretty labile again. We just had a ttt. My BP was labile during the test constantly fluctuating. My 5 y/o daughter did no have elevated HR but she did have elevated BP which surprised them. I agree with the others, get a proper TTT. If you think you are at risk for something degenerative ... find out now and do what you can to head off problems.
  3. I have read chemical intolerances can occur with folks having dys. I am wondering how prevalent it is and if folks may also be vulnerable to food =intolerances. I am especially wondering about sugar intolerances. Both fructose and glucose. I seem to have more touble with fructose. Intolerance to apples and similar fruits. Am also intolerant to alcohol.
  4. I have been having a terrible time with my hadns and feet since I gave birth to Ava five years ago. Started with hand and feet being extremely hot during sleep hours. To the point I'd need to put ice packs on them. Over the year I have been having nightitme numbness and tingling in my hands. I am beginning to wonder if this is part of small fiber neuropathy. I also noticed while riding my bike hard the other night, my feet did not sweat at all. I had always been somewhat hyperhidrotic ... I am concerned I am going int the other direction. <sigh>
  5. Oh, I just wanted to add, for those that do have trouble in the heat, there are cooling vest and materials that can be helpful. I bought a couple for Ava last year. I recommend these instead of the ones with the icky gel inside: http://www.coolingapparel.com/
  6. I have always though I sweat more than usual. I have to use drysol. I can also soak the bed with sweat. My daughter recently did not sweat at all on the sweat test. I knew she had at least HYPOhidrosis (aka anhidrosis). My mother also does not sweat, well except for her hairline. This I was told is a sudomotor issue or cholinergic nerve issue ... peripheral neuropathy I think. I have been wondering though why I would sweat more than usual (hyperhidrois) while my mom and daughter sweat less than usual. They are both part of the same problem and recenlty I learn those with hyperhidrosis can go on to have hypohidrosis. Last night I was exercising hard. I noticed my feet did not sweat at all. For the past five years (immediately after my daughters birth, my feet and hands would get terribly hot while trying to sleep. To the point I would need to put cold packs on my feet. So I am now concerned I am headed in the direction of also not being able to sweat.
  7. Yes, I have wondered about Mast Cell issues, but does this type of disorder cycle? Ava is on a very clear cycle. She as always cycled since she began having more obvious seizures three years ago. But now her episodes are not obvious sz. Ava has eses (electrical status) She has almost continuous abnormal spiking (not actual seizure) on her eeg. Some of the more recent data on ESES states there may be an immune component of sorts with ESES since it responds so well to prednisone. Immune and inflammatory issues are now being looked at in epilepsy in general. No doubt Ava has some quirky immune responses. So do I. Anyway, what I have always figured what has been going on with Ava is her spiking cycles ... it it speeds up and slows down. As it is speeding or ramping up, the aut stuff builds and eventually she has an episode. Once she has and episode, things settle for a while. But the question still remains ... what are the episodes exactly.
  8. "Are you asking for yourself or your daughter? " Both actually, but more for Ava. She is on a clear cycle .. occurs every two to three weeks. Begins with desats * elevated HR and nausea during sleep hours. Next day more intense nausea with vomiting. Lots of fatigue and now I suspect some ortho intolerance during these days. In the past we had assumed autonomic seizure, but now that we know for she she also has aut dysfunction, I am wondering if this could be CVS and as part of the cycle for whatever reason she desats & her HR elevates ... and maybe has some ortho intolerance. I have always had lots of nausea and vomiting. As kid could vomit out of the blue w/o warning. It was always blamed on "nerves" Also had lots of constipation. I have the delayed motility too, both upper & lower GI issues, and like your son, it was always worse in the morning and I'd get some anxious feelings too. But my cycles were never as consistent as Ava's. I do suspect she has the same motility issues ... As usual, I am just trying to sort out what is seizure adn what is not. Thanks for the linkajw4055. I have been there, does not give me the info I am looking for ... I figured the experienced would be more likely to have that info. "Like with migraine, she gets aura first--feel hot all over, or cold first, then the vomitting starts" I am also wondering about the possibility of abdominal migraines. Anyone know in general is migraines can cycle or not? Thanks guys!
  9. Hi all. For those of you that have cyclic n&v, does it come on suddenly, or do have signs it is on it's way? Any mood changes before hand? If you have any signs or changes, how long are the signs before the actual cycle of nausea & vomiting begins? And how long does the N&V last? Thanks, Jen
  10. Thanks for your reply. Are the NDRF tapes available?
  11. At one point I had came across info on how a full bladder can trigger unusual feelings of anxiety (the flight/fight response I think) and once the bladder is emptied, the anxiety goes away. I can't find the info on this, would anyone happen to know of any? Thanks, Jen
  12. My gastroparesis flares up when the rest of my autonomic issues flare up. I don't think one causes the other for me. Most commonl my triggers are food and meds. If you are sensitive to phenergan, then you might want to be careful of all dopamine antagonist. Some of the common antiemetics (meds for nausea & vomiting) are Reglan, benedryl, dramamine, phenergan, compazine etc. These ones are all dopa antogonists and can cause RLS symptoms or exacerbates already existing RLS. The drug domperidone is similar to Reglan, but interestinlgy does not cause the same side effects such as RLS and the other craziness reglan is known to cause. IMO, domperidone works much better than reglan (AKA drug form ****). I was able to get it compounded here in the states. As long as it is for gastorparesis, some compounding pharms will do it for you. I can have a very labile BP ... hypertension one minute then to hypotension. My 4 y/o daughter had hypertension during tilt up on the tilt table exam. Good luck
  13. HI there. Yes, I have both problems. Do you have sweating issues too? I was recently told that the bladder and sphincter problems can occur in a person that has the sweating problems (Hypo and Hyperhidrosis) For the red eyes, I use visine allergy. It is in a green bottle. You mention your eyes look like they have been in a chlorinated pool, my eyes feel like that as well. I feel like I have bleach in my eyes. For bladder issues, the leakyness comes and goes. When it comes, i use pads. I cannot use tampons as they cause inflammation ... so I'd be careful there.
  14. Ava does a medical dietary treatment for her epilepsy, LGIT (low glycemic index treatment). This is different than just LGI. LGIT seems to have helped some of her aut issues. In general, simple carbs or high GI carbs will absolutely exacerbate any or all of my aut symptoms. I am curious though, since we are talking about sugars, is anyone else sensitive to fructose? Fructose is low GI, but for me it causes bladder & gut irritation.
  15. HA! I was just reading about this subject. I have issues w/ delayed sleep phase, sleep paralysis, good ole insomnia etc. Ava has desats and HR elevation during sleep and unusual episodes that may be cataplexy (or something similar) or an unusual seizure that leaves her paralyzed and unable to speak, but she can respond with her eyes. Ava's epi neuro seems to think it is probably a seizure but maybe something else, aut neuro thought it looked more like a parasomnia, cataplexy maybe.
  16. " I think this is r.e. inability to sweat " Yes, it was in re to inability to sweat, but I am trying to figure out the term "sudomotor" and cholinergic fibers and what it measn exactly and beside inability to sweat, what else does it mean? I know he said it can cause sphinter and bladder issues, weakness and sensation problems I think .... but what else. And what is the cause ... I had assumed actual damage or lesion of some sort, but it sounds like it may not be that simple. I have a tendency to need to be able to visualize everything Yes I saw Novak ... he was great! Really hoping he can help me to get to the bottom of Ava's issues.
  17. Ava and I were both tested yesterday. Mine was no surpised .. the usual pots stuff. I am more concerned with Ava and why I went to begin with. I ahve mentioned Ava has unusual episodes that are probably autonomic simple partial seizures. But some of the times when her episodes are long, she is still aware, but goes into a paralyzed like state, cannot move or speak but still fully aware and able to respond with eyes ... reminds me of my own episodes of sleep paralysis. During these episodes, her temp goes up, she is flushed often her o2 drops. I showed both aut neuros a vid of one of her episodes. They are thinking more likely a parasomnia and think in general her true sz, these possible parasomnias and the autonomic stuff is some how related. Her results from the test were different from mine. Her sweating was completely absent and BP was elevated during head up tilt. Prelim conclusion was abnormal study w/ marked sudomotor impairment and evidence of increased adrenergic activity .. findings consistent w/ autonomic neuropathy affecting cholinergenic nerve fibers. We will meet up with hi a month to go over everything in more detail after biopsy and stuff gets back. Sooo ... What exactly does sudomotor impairment mean in re to AD and what are symptoms of? What does increased adrenergic activity mean and what are symptoms of? And what are those cholinergenic nerve fibers and what does it effect? Thanks, Jen
  18. Rachel, I take melatonin too but am thinking of stopping.I have read melatonin can worsen dysautonomia. Have you foudn this to be true? an w/ Ambien, yes it did worsen my dys ... all sleep aids do for me. Especially dopamine antagonists (those OTC PM sleep aids)
  19. Wow! Beside sleepiness, did you have any other symptoms as a child? My daughter has unusual episodes and we are not sure what they are. We both have EDS. I have dys, she probably does. My daughter has epilepsy and her "episodes" (I call them episodes because we are not entirely sure if they are true epileptic sz or not) Anyway, her episodes are what I call autonomic blips. She will flush, become tachy, sometimes o2 drops into th 80s, she gets nauseas and sometimes has several episodes of vomiting. They cycle and cluster. Occur every two to three weeks and she will have a day of having numerous episodes of the above symptoms. Her awareness is usually not altered (as in a generalized or complex partial). HOWEVER ... if she goes status (prolonged episode) she pretty much becomes paraylyzed. The last time this happened was in Sept. She was playing with he cat while I was in another room. I walked in on her unable to move (not stiff as in a tonic sz) She was able to respond with her eyes. During this period her temp jump to 102, HR 160 and so on. Lasted about 15 minutes. We are still trying to figure out if these episodes are sz, something autonomic that is not sz, or prolonged cataplexy. We have one of the best epilepsy sp in the country ... she is not entirely sure. We see Dr Peter Novak next Friday .. he is an aut neuro as well as movement disorder sp. I am really hoping he can help us. Can you please tell me, beside your fainting, do any other aut symptoms cause your cataplexy?
  20. SO will the QSART DX or r/o hyperhidrosis too? There are numerous reasons for both. Here is an article on hyperhidrosis: hyperhidrosis
  21. First, I am curious, why is your name broken shell? If I think of it, I will look this up when I get home. I have a book on dysfunction of the autonomic nervous system ... they have a section on sweating, both hypo & hyper. I THOUGHT but am not positive, they mention how they measure too much. Ava as I mentioned does not sweat in the face, but seems to sweat excessively in the head ... you can feel it from a distance and you can also at time smell burnt hair. Speaking of which, anyone have any thoughts of the burnt smell with sweat?
  22. Michelle, I have ALL of the same symptoms you have. I have also had Lyme Disease. One rheumy thought my issues are from chronic LD, but now I knwo they are NOT and am glad I never agreed to do the long term antibiotics. I do believe the LD triggered symptoms and exasserbated symptoms, but my symptoms were there long before LD. Eventually I would learn I had Ehlers Danlos Syndrome ... which can cause many of the same symptoms as LD, including POTS and other dysautnomia symptoms. Have you been checked for hypermobility? Also, with the pressure in the back of your head, I'd also (as another poster suggested) would wonder about chiari malformation, which is yet another issue related to POTS, but also commonly occurs with ehlers danlos.
  23. Hmmm ... I am wondering about this too. Lack of sweating or too little sweating (anhidrosis or hypohidrosis) is abnormal, but so is too much sweating, or hyperhidrosis. Does the sweat test not check for HYPERhidrosis??? I was under the impression it did. I will have the test next Friday, so will my daughter. My daughter does not sweat in the face and is very heat intolerant. I am heat intolerant also but I think I sweat excessively ... enough so I need to use drysol.
  24. Hey Gary. I have many of the same symptoms you describe including the anxiety. My anxiety is not a psych or emotional thing though ... it is just a quirky dys thing for me. It comes w/ tachy or BP changes. I woke w/ morning anxiety but knew it'd go away with cold water and cold air. For me, dopa antagonists, like benedryl, is a HUGE trigger. Several years ago I saw rheumy that thought all of my symptoms (pain, fatigue, high fever, tachy and ortho stuff) were caused by chronic lymes. At the time I went with it, but now I know it is likely not at all related. I think my little spirochetes are long dead. I am wondering more and more more about what MAcksMom suggested, MCAD.
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