Jump to content


  • Content Count

  • Joined

  • Last visited

Everything posted by ajw4790

  1. Howdy! I know I don't post much anymore, but I am having a bit of an increase in symptoms, even for me. And was hoping you all might have some good ideas etc. My absence from the site is not due to no longer being symptomatic. I am still as symptomatic as ever for the most part. I am still on meds, but they have not changed recently. I was about to make a change, but had not yet. Also, no changes in supplements, drinking, salt, exercise, or eating habits. I have had long periods of insomnia before 4-8 days, but they were always linked to medication or extreme heat and humidity. But, now I have
  2. Hi Jennifer! Sorry we have not "chatted" in a while... I haven't been spending a much time here on the boards lately. More because I am on overload with health issues than that I am feeling better and hitting the town. I am exhausted, but I saw this thread and wanted to comment. I hope I make sense! First, I am sorry that you are having to go through this too on top of everything! Hopefully it will stay as stable as possible, and causes the least amount of problems possible. But, I am glad that your doctors caught it before it progressed. Your dr. does not sound like they are the most supp
  3. My issues got quite a bit worse and led to my having to leave school shortly after having my Hep B vaccinations. I was going into the health care field and required those vaccinations to continue on in my studies. I too have wondered about whether or not the vaccines triggered or worsened something for myself. I too had wondered if this could also be part of the link of so many health professionals having a dysautonomia diagnosis. As far as how it all works or doesn't work... I know I had a few abnormal blood work numbers and I looked them up because they were never explained to me. They were
  4. DINET is absolutely wonderful as an organization that educates and helps patients, caregivers, and families with dysautonomia. It is also great as a resource for any individual looking to learn about dysautonomia, because they know someone with it etc. DINET is also wonderful for many other things that I don't really think I need to list. I love DINET and everyone who has worked tirelessly to make it possible. There are also a few other sites and organizations that also work on awareness and being a source of information. BUT, there is no ONE organization or association for Dysautonomia that
  5. Yes, I have hand tremors. Like others have said there is many different tremors. I guess one could say that I too have multiple varieties of tremors. My main tremor is an Essential Tremor- for me it is a Familial (or genetic) Essential Tremor. But, much of all my symptoms have some genetic link or origin. The tremor was also my "first" obvious symptom, first treated, and sometimes one of my most impairing of accomplishing tasks. It isn't very noticeable until I try to do anything with a heavy object or need fine motor skills. I too learned when the dr. said something by mistake that they too t
  6. Angela, ***Disclaimer: My brain is not working the best right now.*** I was trying to follow your post and question. If I understand correctly you went to CC and saw a neurologist? And he is having you return for tests? Part of the thing I learned there is there is not great communication between neuro. and cardio. and each knowing what each other does. I think they have been working on it, but I know I had that issue. At CC the standing (Head Upright TTT- HUT) is done in their autonomic lab (neuro.) and the "sitting" Hemodynamic TTT is done in cardio. So, from what you said I am assuming th
  7. Hi, I just wanted to quickly add (b/c I am not having a great brain moment right now) that the dr. probably said that you have hyper reflexes or are hyperreflexic, but from what you describe I do not think that he was meaning that you have autonomic hyperreflexia. Because that occurs in individuals with a severe spinal cord injury, and symptoms can be life threatening for those patients. I too have very hyper reflexes, so I know where you are coming from with that. I hope that makes some sense...
  8. Thanks everyone! By just putting this out there and being able to "talk" with others helped a lot! I was having trouble getting to and staying asleep some before this, but after my post I crashed! And it was a relatively restful sleep too, it was nice! Thank you to everyone who took the time to read my post and to post back as well! I am still trying to wake up and get my brain working, so I think I will have to reply to everyone more later. I realize now I got my medical terminology mixed up- I did mean laparoscopy and not laparotomy. Whoops! For the iron supplementation- I started down th
  9. Hi again to all! It has been a while, yet again. I just have such a hard time spending much time on the board anymore. Things move so quickly, there are so many questions, and so much scientific discussion that my brain seems to just shut down. I want to participate more, but when I try I sound so incredibly stupid when I try to make my mess of thoughts make any sense in words. I am so over that issue/feeling! I want to be able to actually communicate! More and more things have continued to occur over the past few months, that I seem to be in this endless cycle of trying to get somewhere with
  10. Oh my, I am struggling to try to put my thoughts into words and then to type them tonight. Yes, so you have been talking about ivIg in regards to small fiber neuropathy and not the umbrella term of dysautonomia. I think what I was trying to describe or talk about was dysautonomia that is caused by small fiber neuropathy. Because small fiber neuropathy can present in a multitude of ways and not always as dysautonomia. Because this is a board for dysautonomia, I guess I was just trying to clarify or look at it purely from a dysautonomia viewpoint. As far as discussing it in terms of autoimmu
  11. Ok, so I did decide to go back and look it up. As, far as the side effects I must be confusing it with something else because it does not sound like they are that serious very often with ivIg treatments. Also, when I looked at what conditions they use it to treat... it mentions ACUTE Idiopathic Dysautonomia, CIDP, MG, Lupus, etc. When it is talking about neuropathies it looks like they mainly treat LARGE fiber neuropathy with ivIg, but small fiber not as much. It seems to be used more for demyelinating forms of neuropathy. So, for most of us it does not sound like it would be that helpful or
  12. Hi, I thought I would jump in even though I do not know that much on the issue... I do have small fiber neuropathy and no dr. has ever mentioned to me ivIg as a treatment option. But, I have seen it here on the board and in research. I really have always had the feeling that it is used very little for dysautonomia. Likely due to the cost, not knowing enough about dysautonomia to really know that it would be a good choice of treatment, and also I though there was a high risk of relatively severe side effects from the treatment (or am I confused with something else?)? I think that when it is use
  13. Hi again! I have been posting very rarely for a while now. I keep hoping to get back to the board more (writing, that is... I do read the board somewhat frequently.) I guess I feel like I owe an explanation to everyone, because I know sometimes I ask questions and then haven't been the best at responding or participating in other's posts. I apologize, and hope to get better at responding. I have a hunch that most of you know the feeling I have been experiencing... I have just gotten so frustrated and fed up with everything health related that when it comes time to chill on the computer, I jus
  14. I think you may find it helpful by looking at it from a "big picture" viewpoint. Many things overlap, but not all of it may apply to you. Not sure if others with OH and not POTS have found it helpful?
  15. Goodness! It seems like things have been never ending for you! I am not sure if I have replied much before, but I have tried to keep up somewhat with what you are going though. I just haven't had the patience etc. recently to type much. But, I did want to finally comment, and say that I can not believe what all you are going through, and the total lack of medical help/answers that you have gotten. I am certainly hoping that there is a breakthrough for you and your medical team soon. Can they consult with other top hospitals like John Hopkins, Mayo, Cleveland Clinic etc? I can not remember if
  16. Hi, I don't take anything, but just wanted to say if you are on any meds to make sure to discuss taking anything, even OTC meds with your dr. first. Because, some of what "we" often take can not be taken with all allergy meds.
  17. Hi, I think that I can greatly identify with the problem you are describing with cognitive function. I struggle all the time, and have for as long as I can remember, but has gotten worse with age (I am 26, so not b/c of OLD age. ). I always hated being called on in school, because I could not multi-task and think as quick as the teachers would like. Then in college we had more discussion group type classes that I struggled to keep up with my understanding of the discussion and process what I prepared for the class. By the time I had something to add to a topic everyone else had moved on. My
  18. Have you ever been compared to Pavlov's dogs? I can now say I have, although I would have much rather have not been compared to a dog, especially Pavlov's! And, yes, this occurred at my recent trip to the institution I have been discussing in my other recent post. It was not made by a doctor (MD), but by an exercise physiologist that regularly treats POTS/dysautonomia patients. I have to say that I took great offense to the whole thing. Not only because of the behavioral conditioning part of the analogy, but because he also jumped to a conclusion and did not have all my testing information! Hi
  19. I don't think not having EDS changes my treatment. My drs. have always gone back and forth in it, so it never really affected my treatment before. Even though they arrived at different diagnoses than what I had been given before, they said that the treatment was the same for my previous diagnoses and the ones that they gave me. So, that is why they could not understand my frustration. They also could not believe that a simple response of "well, our tests are just better. And, the other tests are wrong." was an adequate enough answer to why I should believe their test results over the others t
  20. Some of the "answers" I did receive... That I do not have EDS according to a geneticist at the clinic. That according to my 24 hour urine test I do drink enough and consume the appropriate amount of sodium. So, at least I am doing something right! And, so evidently this the best way to determine if you are drinking enough and consuming enough sodium. I had not had this test previously, so that was helpful news. My heart is healthy in structure and electrophysiology. I already knew this, but it is good to have a more thorough check up. Genetics play a big role for me, but there is not anyt
  21. So... where to even start!? I apologize that it took me a while to reply, but the frustration etc. from this appointment has led me to almost have to go through a recovery process that is taking me through this rollercoaster of thoughts and emotions. I was at the hospital for testing from early Monday to late afternoon the following Tuesday. So, it was 9 days of "torture" for this incredibly useless outcome. (I realize that the experience could vary greatly for each patient. It depends on the doctors you are dealing with, what you go in there knowing about your condition, what you want from t
  22. Congratulations!!!! Happy that everything went well!
  23. I tend to tolerate caffeine fine, and use it in small doses to keep me going. Larger doses tend to make me more sleepy than hyper... So, I do not necessarily have a typical response to it.
  24. Welcome! Sorry I do not have much to add right now... Hope your appmt. goes well!
  25. Hi, You don't want to apply it so it is loose like you are describing. Make sure to follow the directions with that come with the monitor. It is most likely having to fill higher than it normally would because it is so loose. It has to fill a certain amount and sense that it is plenty snug to work, but if it starts to loose it is probably overshooting. Hopefully that will work!
  • Create New...