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Hi, I just wanted to clarify that Droxidopa is different than L-DOPA (Levadopa) that is commonly used for Parkinson's disease. Droxidopa is used for Parkinson's disease as well, but to treat orthostatic hypotension. Parkinson's was mentioned in previous posts and I just didn't want anyone to get confused...

Hi, I know that this is likely going to be one of my next trials to find something helpful for everything, but I too do not know much about it. I am interested in anyones personal stories. I know I have looked it up some before, but it has been a while. I need to do more research again... Good Luck!

Hi, I need to start taking mine again. I didn't notice much difference before, but it wouldn't hurt. Hopefully this will help remind and inspire me to start retaking it and my multivitamin and magnesium. I am glad you found something that helps!

Hi, I too have awful sleep patterns and insomnia. I just had a few days were I almost slept all day long, and now I am back to my ol' insomniac self, and not able to sleep more than a couple hours at a time. I still think I need a sleep study, but it is one of those things that has been hard to get a referral out of my drs. for, and it already seems like I am doing testing all the time. So, I always think why add more? But, it is something that I feel may be beneficial. I hope that your dr. appmts. and the testing goes well, and gives you some answers! I did see today this article on sleep deprivation therapy to help get back on a "normal" sleep schedule that I thought was timely when I read your post. Not sure it is real helpful, but it does add in there that it may not be for everyone. http://www.associatedcontent.com/article/1...pg2.html?cat=70

Hi, Sorry it has been so rough. Tylenol never does much for me either... Do, you think you need an antibiotic or something to help fight whatever it is off? I really guess I don't have any words of wisdom for what may help... What kind of dose of Tylenol? I wonder depending on what meds you are taking if it minimizes its affect, and maybe need a larger dose? Might help to call a dr. oor pharmacist... What kind of heart rate? You aren't stuck in an abnormal rhythm are you? It is just more of your norm when you are sick kind of tachycardia? Hope you feel better soon!!!

Hi, Show sounds interesting! I wish I had caught it. Maybe on repeat...

Hi! Yes, I can totally relate and understand where you are coming from! I think it is crazy sometimes the obvious things that people do not comprehend. I know that if you don't live that life everyday, it is hard to understand, but I feel that it seems so odd that if you are arounds someone who does live the life of feeling like crud everyday, that at some point you do not become more aware and understanding of that person. An example I had happen recently. I got into a "heavy" (emotional/hard to discuss) conversation with family members over financial topics, and I was so obviously struggling for the right words for what I wanted to say, and try to get my point across correctly. Even though it took me FOREVER to get thoughts out, and they where so broken up, and for some would be borderline not understandable. Anyways... I said my comment and then the person BLEW UP(figuratively ) on me. I was like what is the deal??? All I was asking for was a minor accomodation to avoid an allergic reaction on a daily basis. Then, I equated it to a peanut allergy, and asked if I were allergic to peanuts wouldn't you help me try to avoid them? How is this different??? Then I got further in the conversation and tried to clarify what I was talking about, and then they were like... well, that is not what you said. Well, it was what I was attempting to say! So, after discussing my one comment for like 30 minutes, they FINALLY understood. But, what REALLY got to me was they were like, "so, why didn't you just say that?". I was just thinking I was TRYING. Then, I said you do realize that with all this my thoughts and how I communicate do not always come easy or out in the best way (especially when I just woke up and was having a rough day! ). Then, the LIGHT WENT ON--- they said oh, that makes sense... I knew you have that problem, but I didn't put that into perspective here. I am thinking... well, it pretty much should be in perspective all the time and you should know that by now.... But, I have to remember for those who are not me, and do not live with this on a daily basis, even things like this are difficult to understand... It is sooooo FRUSTRATING!!!!!!

Hi again, I know I posted this in the middle of another one of my threads, but I am still unsure about whether or not the insulin levels go too high? I feel like I have been told different things and am confused to whether or not my results were normal? Anyone know? Fasting: Glucose 87 mg/dL Insulin 7.4 uU/mL 30 min: Glucose 189 no insulin tested 1 hr: Glucose 152 Insulin 193 2 hr: Glucose 70 Insulin 56.6 Fibromyalgia question: For years I worked with numerous drs. to find out medically what all was going on with me. About the only thing that I ever got out of it was that they worked to determine if I fit the criteria for fibromyalgia. All I ever heard was it was a diagnosis of exclusion, and none of the drs. ever actually made the diagnosis. Now I think I am actually glad, because it made me keep seeking answers and I found out it was actually dysautonomia etc. I feel like dysautonomia/POTS fits better AND at least there are some tests that can physically show that there are abnormalities. Now somewhat out of the blue one of my neurologists asked if he had ever discussed Fibromyalgia with me? He said it in a way, especially after proceeding to poke at me and get my painful reactions, that he believes that I would probably fit the criteria for fibromyalgia. My question is does a diagnosis of fibromyalgia hurt, hinder, or help with the overall treatment of dysautonomia and associated conditions??? I am not sure if it would be worth pursuing? I kind of feel like I would be taking a major step backwards... Any insights?

Hi, Is this what you are looking for??? Cerebral hypoperfusion due to decreased cardiac output. From: http://www.merck.com/mmpe/sec07/ch069/ch069e.html "Pathophysiology and Etiology: Syncope results from global CNS dysfunction, which may have many causes. Typically, CNS dysfunction results from cerebral hypoperfusion. Cerebral hypoperfusion most commonly results from disorders that decrease cardiac output (CO). CO can be impaired by primary cardiac disorders or conditions that decrease venous return (eg, reflex-mediated vasomotor instability)." The reflex mediated vasomotor instability is the same thing (I think) as neurocardiogenic hypotension. So, for me I experience the grey outs when my blood pools and I get tachycardic. My BP may lower slightly, but the underlying cause of the grey out is decreased blood returning to the heart causing a decreased cardiac output, and less blood to the brain. The hemodynamic tilt table test I had showed my stroke volume going from 100 mL supine to 33 mL tilted (sitting) after 5 minutes. And I was greying out among other things...

Hi everyone! I have a couple of questions... Anyone ever have the heavy, raw, and swollen tongue feeling? I have this semi-frequently, but have not linked it to a cause. Does this sound like an allergic reaction? Last time I had it (Wed) I had blood drawn and they put tape on me before I could stop them (I am very sensitive to adhesives), and it seems like I had a couple of other "different" things on that day... I think I had tomato products, which I recently learned that since I was very young I would get splotchy redness around my mouth (not staining, but hive/rash like ) . I don't tend to get quite that bad of a reaction anymore (at least not an obvious one). So, who knows, but it feels like an allergy... I also got this weird ear/jaw pain that felt more like I stuck something to far in my ear (which I didn't) and was keeping me from opening my mouth very wide to eat/drink. It was weird... and it hurt! AND I had a migraine! I have tried and am continuing to try to get in and get allergy tested, but with my drs. it is easier said than done.... Since Wed. when all this weirdness happened, and I left from parents house 2 hours away to my apartment in another city, AND had a dr. appmt. here in town. After all of this was done... I crashed! Then ever since I have been able to wake up and do a few things and crash again. I am sleeping HARD! Very weird for me! And I have since slept 18-20 hours a day since Wed. night! Anyone else have this??? And it is annoying because I have so much I need to do, but I don't have the energy, endurance, stamina, ability to stay vertical and alert.... My trash isn't taking care of itself... and I have a bunch of laundry etc. to bring in from the car, but I haven't had enough energy. . I don't know... I think it is back to bed though... I am exhausted!

Hi! Thanks for your replies! I put a call in to the dr. for more explanation, but still have not gotten any more info. From what I understand it looks like I am don't have a decreased overall blood volume- which is good! From the low hematocrit and low red cells, I think that show that I am anemic. - Not really new info. for me, but something I guess to work on. So, a SPECIFIC question: Does Hyperkinetic Circulation= High Blood Pressure or is it more of an overall, everything is working faster than it should while supine? Anyone else know what THEIR stroke volumes are supine vs. tilted upright? The 100 mL to 39 mL seems like a large change... No wonder I felt awful! It also looks (from what little I know) that the test does back up the EDS/veins not properly returning blood flow back to heart when upright. ??? (from decreased TPR and poor compensatory response). Anyone know if the blood distribution ratio number dropping by 44.5% indicates blood pooling???? Does that mean that 45% of my blood pools??? I am still not sure about the GTT/insulin levels either. The numbers seem high? I have wondered if the results indicate that the insulin OVERSHOOTS and then brings the glucose down TOO low. For me a glucose of 70, I am already having a decent amount of hypoglycemic symptoms. So, it is not necessarily low, but for me much under 100 I start to have symptoms. The endo. blew off these results, and pretty much me in general. I probably won't see them anymore... Thanks for the help!!! Babette, I had to work hard to get the drs dictated letter for my appmt. I did not have exact printouts of the results, just the letter. You won't likely get the results the day of- I didn't. Mine seemed to take a while, like two weeks. And I still have to request a copy of the actual results. If you do a search for me or look back a little bit you should find the thread on what I experienced testing wise. It was a rough day, but not impossible. Not sure what you have scheduled and when though. So, it may be different. I really just went in there with a relaxed attitude, and that whatever will happen, will happen, and deal with it as it comes.

Hi, Have you looked into whiplash after your car accident? Also, some of what you said made me think more vestibular disorders or a part of your current diagnoses that you do not often experience. Not sure from what you said that POTS fits, but a TTT is the best way to find out if it does.

Hi, From what I know a TTT is the gold standard way of diagnosing POTS. The other tests mentioned are more for dysautonomia as a whole. The sweat tests look at small fiber neuropathy, and the breathing tests look to see if certain ANS reflexes are intact.

Hi, I haven't found too much useful information from books so far. Dr Grubbs books are good- he has two. I also ran across a book about dysautonomia at the local library- it was okay, but it was based more on Mitral Valve Prolapse, and some of the info seemed a little outdated.

Thanks for sharing! I wish I felt I could write poetry.

Hi, I hope that she starts to feel some improvement from it soon! Do they seem familiar with dysautonomia at the hospital where she is at? Hopefully the combo of meds, exercise, and overall conditioning will be beneficial.

Hi, Vitamin deficiencies are normally due to problems with the vitamins being absorbed by the body. So, if they have gastric issues (celiac or not) it can cause malabsorbtion of vitamins, such as B12, which could worsen symptoms.

Hi, I get semi-similar symptoms. While laying, sitting... whatever if I am in one position to long and blood flow is diminished to certain body part, I will get those symptoms. For me it is a cross between blood pooling and leaning/laying on etc... something the wrong way causing blood to have a difficult time getting to my arm/leg etc.

Hi, Just wanted to say that it is good that it looks like that you have found a good, helpful dr. and are getting help with trying different treatments etc. Looks like things are going in the right direction. And Welcome! (if I haven't already said it).

Hi, I have experienced much of what you describe. Some of what I experience is so hard to put into words so others understand, and it is sometimes hard when others describe some of the more different symptoms to determine whether or not that is the same thing that I experience. So, for some of the visual or tremor symptoms I wasn't as sure just because I think it is different for everyone, and everyone perceives and describes their symptoms differently. But, overall it would seem that POTS/dysautonomia could cause the majority of the symptoms you listed. But, that doesn't mean that there is not anything else going on etc... I think that your cardiologist is limited in his experience with POTS and related disorders/conditions and that it would probably be helpful to see a specialist familiar with dysautonomia. There are a few drs. I think that are relatively close to you, if you look on DINET and past threads you can probably find a dr. Exercise can be helpful, but is not the answer to everyone with POTS. If he said that 95% comment, makes me want to ask, how many patients he has actually had? Is he sure that it was all exercise and not meds? And possibly they just stopped coming to him because they were not getting enough help and went on to a more experienced dr, and in his mind because they no longer see him they are "cured". Who knows?

Hi again! I am even further confused after looking more at my GTT with insulin results. Fasting: Glucose 87 mg/dL Insulin 7.4 uU/mL 30 min: Glucose 189 no insulin tested 1 hr: Glucose 152 Insulin 193 2 hr: Glucose 70 Insulin 56.6 Anyone know what this means? It seems like the numbers are all over, and that the insulin gets pretty high. They had said it was normal, but after finally actually being able to see the numbers in front of me they look screwy. If anyone has any idea to what the ideal "normal" is or any overall idea to what all of this means, let me know! Because I am confused. Thanks!!!

Hi, I recently FINALLY got some of my results back from some of the ANS testing I had done. I was wondering what it all meant for people like us? How does it help to know this? Anyone have similar results??? I know the terminology (what TPR, Cardiac Output, SV etc. means from multiple exercise phys. classes), but in the big picture, when looking at other things like associating it with POTS/Dysautonomia, what does all of this mean? If you have had similar test results, what are common treatments? So, what does this mean??? From blood volume test- Red cell volume moderately reduced and plasma volume mildly increased. Total blood volume is normal. Reduced Hematocrit Hemodynamic tilt results- Hyperkinetic circulation while supine Rapid pulmonary transport time Increased cardiac index Stroke volume of 100 mL to 39 mL (supine to 5 min. tilted) Reduced TPR and normal EF After tilt the blood volume distribution ratio fell by 44.5%. TPR disclosed poor compensatory response of 33 uM2 Cardiac index fell to 2.309 L/min/M2 BP went from 116/66 to 105/63 mmHG HR went from 76 to 114 bpm Also, had abnormal QSART results (like before) and with "normal" TTT had normal BP response, but HR increased over 30 bpm (but not sure how much). Any help deciphering this would be greatly appreciated!!!

Hi, I agree with Rachel that from what you describe it sounds like you just sat on them too long in an awkward position that restricted blood flow etc. Which then made them numb or hard for you to feel where in space they were, which caused them to give way. Plus, muscles may have not had enough blood. For me I do the same thing quite frequently and then the pins and needles feeling comes later (normally more in a throbbing fashion) as your leg starts to refill with blood. It does not sound worrisome.

Hi, Thanks for your replies. Yes, I knew I was going in for testing. I had already had an appmt. with the dr. over a month ago, and he then ordered these tests a week or so after I had returned home. So, this time I just went up for testing.

Hi, For some information regarding testing at CC. See my recent post. http://dinet.ipbhost.com/index.php?showtopic=11763 As far as neuro. vs. cardio. I see a lot of neuros (4-5) and 1 cardio. I lean more to the neuro side. I personally believe it is best to consult with both specialties or less there is just absolutely no symptoms for them to look into in a specialty. I also would encourage you to use the search tool at the bottom of DINET forums to search for other similar conversations or reasons why people find it more helpful to see cardio and/or neuro. Also, I think it is helpful, whatever their specialty, to see a dysautonomia specialist (see dr list on DINET).