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ajw4790

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Everything posted by ajw4790

  1. Hi, I wanted to bounce in on the conversation about testing to see if you metabolize drugs correctly etc. (the gene Suzy is talking about). What I was told by a local allergist when I asked her about a test to see how I metabolize meds, was that those tests are only available commercially and not by dr. prescription. They are still more of a research tool. But, I believe she said that you can (if you really want to) try to contact a company that tests for it, and have it performed privately. So, I do not see insurances covering it, or many drs willing to interpret and utilize the results. So, at this point for myself I figured that it wouldn't make much difference, so I have not pursued it. But, it appears through Suzy's experience that Mayo does do it, so if you are serious about getting it done it sounds like you have to go to Mayo. Hope that helps somewhat! (bit of a bummer, I know! )
  2. Thank you all for your replies and helpful words!!! As soon as we are moved and I have a better idea of where I will be I will have to PM some of you for info! I am interested in any dr recommendations in the Springfield/all of Illinois/surrounding area. I have just barely looked up drs. just enough to see that there are some out there covered by my insurance. But, haven't looked further yet. Thanks!!!
  3. Hiya again, I just wanted to pop in and say that I was prescribed prescription iron supplements, but I went to a dysautonomia specialist on Friday, and he said that many people tolerate the OTC strength much better than the prescription. He said the one in the yellow box made by Naturemaid. I only have found the one made by Naturemade, so I don't know if the other one exists. So, if you are unable to take the other this may be worth the try. Also, to help absorb the iron he tells people to drink orange juice with it, because the vit C helps to absorb it. And Colace etc. can be taken if side effects are worse enough. I think start with one daily and can increase to two a day if able? (that part I kinda forget! , but I figured that was a ways away). I haven't started to take it yet, but will soon, and hope to get my ferritin level up! I have worked on increasing iron more in my diet and taking my daily multivitamin more regularly. He did seem to think it was important to work on this deficiency, but not overly worried etc. But, he was nice and spent quite a while on how to best try and treat it now. Hope this helps some of you in the similar boat as me!
  4. Hi, I don't really have any info to offer, but didn't want your post overlooked. This has been brought up many times, so you may want to do a search to look at previous posts to see what people prefer. Also, broken shell has a current thread on a similar topic that you may want to check out.
  5. We need exercise for many reasons in appropriate amounts of appropriate modes exercise, including to strengthen our muscles to strengthen the muscle pump to decrease blood pooling. Stronger toned muscles can work like compression stockings on the inside of our legs to help squeeze the blood back up and keep from pooling. This is one of the many reasons dysautonomia specialists recommend exercise as one of the first/primary treatment modalities.
  6. Hi, Sounds like a vestibular issue. Make sure to disciss it with your PCP and ask about vestibular testing. For some of this there are super easy treatments that a practitioner can do to help with this vertigo related nausea. This is not likely an autonomic issue, but can be increased if you increase your salt intake like many of us do. BPPV is one of the many conditions that can cause this type of reaction.
  7. Hi, I think my hemoglobin etc. are within normal range, but have not seen with my own eyes any of the most recent labs. They did not infuse me, or even bring it up yet. We shall see. I hope that you get in to see some of those drs ya mentioned and that they are helpful. I wasn't sure on the iron supplement post-menopause... what you said makes some sense though. I would think though if a man got that low of a ferritin level they would supplement? Who knows? I would say make sure to followup with them on that.
  8. Hi, I am not aware of it, but I do think that if the ANS is working just right (or wrong-depending on how you look at it ) then you could have an irregular heart rhythm etc. causing less beats, and leading to decreased oxygenation. Or multiple other scenarios, my brain is getting foggy/misty/rainy, so my thoughts are not coming to easy! I do think that this is where Reflex Anoxic Seizures come into play though... I think you have said before you have looked at that in regards to your daughter? http://www.stars-us.org/medical-informatio...ic-seizure.html Hope that helps!
  9. Hi, You can look up past posts using the search engine, as the question has come up before. But, I think what all the journal articles and drs have said is if it is just tachycardia with no conduction abnormalities/arrhythmias, then there is no damage to the heart muscle. So, as long as your tachy is due to POTS and have no arrhythmias than you should not have anything to worry about.
  10. Hope your appmt. comes soon and that your symptoms decrease soon! Have you figured out any triggers to your increase of symptoms? Weather? Hormones? Food? Hydration? Electrolyte balance? I hope that you find some relief soon!
  11. Hi, I wanted to add that I think that many (most drs) who understand dysautonomia do recognize cerebral hypoperfusion as a symptom or a process that occurs. As far as cerebral hypoperfusion occuring with a regular BP measurement is not uncommon. You do not have to be hypotensive to get it. It is more due to blood pooling distally and having less blood circulating at that pressure, and taking into account the TPR etc. By the time the blood starts to get back to the brain there is not enough ummpph behind the blood to make sure that it goes optimally against gravity and to the brain. Also, the amount of O2 in blood by this time has to be considered. As far as treatment, normally decrease blood pooling and increase fluid volume, via Midodrine and Florinef, salt and water loading, compression, and exercise to increase muscle pump to assist blood flow return to brain etc... Hope that answers some of your question!?
  12. Flop, I was thinking the same thing! Please make sure that you have adaquate ventilation in the garage (opened garage door) to avoid a build up of CO, and getting carbon monoxide poisioning!!! But, I am glad you found something that works for you!!!
  13. Hi, I am having trouble understanding what exactly you are talking about? Where at on your neck? What does it feel like? Any triggers? Swallowing an issue at certain times? When thinking about that you have to swallow? Overactive gag reflex? Can't breathe at all? Or through nose? Chest tightness etc? How does it feel? It is hard to respond much, if I am not really sure what you are saying that you are experiencing...
  14. Those who have breathing difficulties while lying down, sleeping etc. Have you been checked for sleep apnea? Even if you have no signs or don't fit the typical apnea profile. Some of what I read in posts sounds a lot like apnea or related issues. You may want to talk with a sleep specialist. Also, did you look into asthma?
  15. Hi, I don't remember getting stomach pain with it. I had the tingling scalp and electric shocks down side of face. For me they never lessened. Did you take it on an empty stomach? Lay down within the 4 hours of taking it? Hope the med trial gets better!
  16. Hi, I have had bouts of this in the past, mainly brought on by meds. But, I have an idea of what you are talking about. At first glance or whatever, inability or problems with thermoregulation sounds like classic thyroid symptoms. I would make sure to get EVERYTHING checked. But, also you mentioned your ferritin level... Did you see my recent post on finding out that my ferritin level is 3?! So, getting that test result back made me research the topic a bit... In it I remember seeing that with low iron you can have difficulty with temperature regulation, along with many other issues. I would talk with your dr. about that test result and a plan to treat it. Also, possibly try eating foods high in iron and see if you notice any differences in how you feel? Why did you mention not taking iron supplement if postmenopausal? If iron stores are low, I would think no matter what, if you are able you should try to increase iron. What does your dr say about the ferritin level? Did they write a script for an iron supplement? What are your current meds? What do your drs say about weight loss and lack of eating?
  17. Hi, Reminds me a little of how I used to get back in high school... Don't have any answers to what was up with me back then... I think it was a combo of things, post-appendectomy, drs thought I had mono, chronic strep throat/URI (nausea due drainage in throat) etc... I guess work to rule things out... Have you had an upper endoscopy etc to look at acid reflux, have any upper respiratory issues, any reason to suspect appendix or gallbladder issues, have you had the gastric emptying test to look at gastroparesis? Either way, sounds like it may be a good idea to consult with a gastroenterologist on what may be causing your issues. Depending on things the right ENT may also be helpful. A neurologist and EP cardio are apt to not be willing/wanting to address this issue, so make sure to discuss with PCP and see about getting into see a gastroenterologist. What are you trying to eat? How long since last ate? I have also had this problem if I take the wrong med or vitamin prior to getting enough food in me. So, if you take meds in morning, you may want to try to make sure you have more in stomach prior to taking them. Vitamins can be really good at irritating the stomach like this. Look back to what has changed since you started feeling this way. Try gradually to change things to find a trigger etc. (But, not change meds- talk to dr.) Are you working out right before bed? Why do you want off all meds. If they are working why not stay on them a while, and possibly wean off later.
  18. Hi, I have to finish getting around for an appmt, but thought I would quickly post... I think they are referring to HSAN 1 & 2. For info. google hereditary sensory (and) autonomic neuropathy. I think they probably ruled the others out by that pain response is intact and that she does have the ability to thermoregulate (sweat). Hope that helps!
  19. Yeah, I have seen a couple drs at CC. The one wasn't as knowledgeable (didn't appear anyways), but the other one has many patients that post here on the board. Glad you found him!
  20. YAY! Wahoo! Happy for ya! Hope that he is able to continue to help you out!
  21. Best of luck on your appointments!!! When do you go? Make sure to update us!
  22. My allergist was familiar with the link of POTS and MCAD. Where do you live?
  23. Hi! I am glad that you had a beneficial appmt! I wish you didn't have to receive the news of two diagnoses, but at least now you have a better idea of what is going on!
  24. Broken Shell, I did forget to ask about how/why the dr. you saw did not think that any of your symptoms were related to low ferritin level? What symptoms was he referring to (tachy, arrhythmias, mental issues-ADHD, confusion, memory, fatigue, muscle twitches, RLS symptoms)? Just curious! Your experience with the iron supplements sounds awful! Did they find out why you had an issue with them? Is it an absorbtion issue? Thanks!
  25. Hi, Thank you so much for everyone's reply! I called the dr. today to check on a couple of things. Found out the amount of iron in my body has never been looked at and that this was the first time the ferritin level was looked at. I just feel it is crazy this went unlooked at for so long. But, I guess all my labs done at my normal local health system had normal hematocrit and hemoglobin levels. I do see where at CC early this year they were low and they said it suggested anemia. But, it was so mild and the way they made it sound was kind of like you hear ever since puberty hits, is that young females often show to be slightly anemic and may benefit from a multivitamin. So, I figured that this what what they meant. I never would have thought that if they looked further they would find that my iron stores in my body are close to non-existant. Iron affects so many things, so no wonder that some of these symptoms persist, and are not helped by medication. I still don't think that it is the answer to all my problems, but I could see that with proper treatment where it may significantly reduce some of my symptoms. Which of course would be wonderful! Flop, Although it is a bit old, the most recent MCV I found was 86.3 and that was all the way back in 6/25/07. I honestly am not sure if it has been tested since... My records are pretty out of order and hard to find with the impending move, and I need to go get another new complete copy of my records because I recently gave them to a dr, who was not sent my records. Before that it was 87.1 (six months prior). I will have to see if I have a more recent test result. What is yours and how is it linked to this? Thanks everyone!
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