ajw4790

Hi again! I continue to think about this topic... SO, if we are not getting enough oxygen to our brains, it makes sense that something like this could be helpful to our symptoms. I realize it wouldn't be a cure all, but if it makes "normal" people feel more energized etc. Why wouldn't HBOT be helpful to us? I wish it was cheaper and easier to find! I think it is interesting that it was also on Oprah... I missed that. And, that Kaye has actually TRIED it and had SUCCESS with it! This has also made me ponder oxygen therapy as a whole and how that may or may not be helpful to us. I WOULD REALLY LIKE TO KNOW WHAT A DR'S. POINT OF VIEW IS ON THIS!!! I know that TOO much oxygen is a BAD thing!!! So, it would need to be prescribed and overseen by a drs. supervision. I had always wondered what an oxygen bar would do for our symptoms??? In searching I also found info on how HBOT helps relieve migraines! Here is one link I found. http://www.elements4health.com/oxygen-ther...-headaches.html Anyone else have any experience or discussed this topic with a dr?

Hi, High blood pressure spikes can cause a tension headache as well. (at least I believve that was listed as a potential cause) Also, I am wondering why you started two meds so close together? Most of us are told to start one med at a time and give it at least close to a month before starting another. This way you know which one is helping or causing side effects. You may want to talk with your dr. about a slower way to start on meds. Hope this helps!

Hi, It has been one of the few meds I have tolerated relatively well, and I also had the most positive benefits after starting it than I have with any other meds. It helped a lot with my heat intolerance and ANS going into overdrive. Take it slow and give it time. Approach it with a positive attitude, if it starts out negative it is more likely to end negative (with negative side effects due to stress etc.). Give it a chance to work. If this med doesn't work for you then try another. I have went through 20+ trials since my diagnosis a couple of years ago. It is hit and miss. A whole lotta miss sometimes, but you won't know until you give it a good honest try. I also found drs. are easier to work with and more on your side if you are open to trying things. Not blindly of course, but if there is good reason to try something (research that shows it can help). I still haven't taken sleep and pain meds they gave me because I thought it was all too much and wasn't going to solve the problem. Zoloft of course doesn't solve anything, but it can significantly decrease symptoms and in turn increase your quality of life. Hope that helps!

Hi, Sorry you are having a ongoing headache! It sounds like what is called a tension headache due to your description of it is like wearing a hat that is too tight. There are many possible causes to tension headaches. Try and google tension headaches and see what you find that may fit. It might be stress, posture changes, allergies, hormones, meds etc... If it keeps up make sure to talk with a dr about it, so they are aware and can help you determine the best treatment. It shouldn't of course be the med you just started. Did you just start or stop one around the time the headaches started? Hope you get relief soon!!!

Wow! Sounds like quite the ordeal! So, I wasn't sure I understood- did they find anything that will be useful to you? If not... that really stinks, to have to do that and not get any info from it! Are you able to drink water during the test? I would not survive if I couldn't!!! They have talked about making me do this test. So, when you are feeling better you will have to tell us more details about this test. Hope you recover from all that "fun" soon!!!

Hi, Could it be that your meds are just working that well to keep your vitals normal? I too do not see anything weird with your vitals, they look normal. Maybe they said to go off the meds because they want to see what you look like without taking the meds. If tachycardia is your main issue and it is not always orthostatic related, maybe you actually fall more under the umbrella of inappropriate sinus tachycardia??? I hope you will be able to get answers at Vandy!

Hi, Sorry, I wish I knew as well. My best advice is to just make sure to take care of yourself. I know when I get like that I tend to feel less like eating or getting up to get a drink of water. Make sure to get plenty of rest. I also tend to get of my med schedule, which doesn't help things. Also, maybe try biofeedback/meditation techniques to try to calm the ANS. Not sure there is a great answer out there... Who knows... Hope you feel better soon!!!

Hi again! They are here in OH. PM me if you are interested in more info. I decided I actually do have a question! How do you deal with overly hot and stuffy exam rooms??? I don't want to seem to weird or like I am trying to be dramatic, but at the same time I hate being in outer space trying to stay upright by the time they finally get to the room. (then of course I forget everything and just want to get out of there!) I do dress in layers (no amount of layers would have helped me today). I also bring cold water (drank it all half way into waiting today). Have learned to look for a thermostat in the room (they didn't have one). Also, learned to say something in case they can adjust it (also not helpful today). Started to fan myself with whatever I could find in the dark, door open room. I also tried to make a cold water paper towel (but water was not cold at all)... I also kept getting up, moving around, and doing countermanuevers. What are your secrets to long waits in a hot and stuffy exam room?

Hi everyone! I had an appmt. with the allergist today. Of course I had a big "adrenaline" day yesterday, and couldn't sleep until about the time I had to get up for the appmt. (don't you love when that happens!? ). So, I got up and got around as much as I could, I did eat string cheese and almonds before I went, and didn't take my medicine so they can see me as is... (I have been taking it about the time of the appmt anyways). Sooo... they made me sit FOREVER (a total of around 1.5 hours) in a hot, stuffy, overly florescent treatment room. First, I was just very uncomfortable... I opened the door to allow more air in, and then I turned the lights out (they thought I was REALLY weird!!!). But, after having to sit so long in that environment with not taking my meds I went downhill... FINALLY, I was leaning up on the door frame, and asked one of the nurses that went by where my dr. was (really behind I guess! ), and told her I felt like I was about to pass out due to the heat etc... I was impressed in that she actually LISTENED, paged the dr. and checked to her status, and helped me lay down. They checked my BP, HR, pulse ox, and glucose. They also stole the dr I was seeings resident away from her to come in and see me (all within 5 minutes!!!). I was just impressed after being blown off so many times before that they actually listened and cared!!! The one thing was is this dr just showed up while I felt cruddy and laying down and didn't introduce himself, and just started asking me every question under the sun. I just kept thinking I know you aren't the dr. and I really don't want to have to repeat all this later... 30 minutes later after asking I then realized that he works with the dr. I was seeing. Good to know who I am giving my life story to!!!... Get this... they both knew what POTS is!!! AND what MCAD is!!! AND how they are related (including all the research out there!!!)!!!! At first I had figured probably the best that will come of this appmt. is plenty of frustration and maybe testing to see if I am allergic to anything. I thought if I was lucky they would hear me out and let me ask if they thought the MCAD direction should be looked into, and that they would boohoo me. BUT, they knew about it already, took a pretty good history etc., seemed to think it warranted testing, and they did order the preliminary testing for MCAD etc... So, although it wore me out, it was a pretty good appmt!!! I am impressed that they knew about both diagnoses, their treatment, research, etc.!!! Now I just wait until the tests come back... I guess I don't have any questions about this, but I had to share my dr. appmt. experience. FINALLY, one that is more positive than negative!!! Wahoo!!!

Welcome! I will echo others in finding a specialist if you haven't already. Also, look through old posts on adrenal fatigue and thyroid issues by using the search feature on the bottom of the page. I don't have a lot of specific info on either, but I know they have been discussed before.

Hi Suzy, Sorry, it took me a while to get back and respond to your reply. Yes, among other things exercises like Kegels may be helpful. Like many others have said try to see a specialist to see what they say. Also, depending on what is exactly going on there are other therapies that a physical therapist that treats/specializes in womens health issues can help treat incontinence. It could also be from nerve damage from having given birth. I don't have experience in this area, but depending on how you deliver and if you have to have an episetomy (sp?) etc. You can have damage to the nerve(s) that control the sphincter and sensation in the area. Your best bet would be to find someone (dr/PT) familiar with these types of issues.

Hi, Yes, I was replying to the part of the original post about not being able to feel things that are hot, and not on temperature regulation/sensitivity issues. Thanks!

Congrats on the great visit! I hope that it proves to be helpful!!!

Hi, What you describe is decreased temperature sensation. Temperature sensation is conducted by small nerve fibers, and when it is decreased it is likely due to a small fiber neuropathy. Many of us on here have small fiber neuropathy and the associated symptoms, including myself. I too have decreased temperature sensation and can sometimes touch things I know are hot, but I do not feel any heat. When you were tested for POTS/Dysautonomia did you have a QSART test? This is the typical test for small fiber neuropathy. If it shows decreased nerve activity it indicates small fiber neuropathy. The small fiber nerves control the ANS and some sensory input (but not all). Also, safety is a factor with this... Make sure to be careful, and be proactive to avoid any issues. With this you have to make sure you don't step on something unknowingly etc... I had a long nail (hardware) go all the way through my tennis shoe and was poking me slightly (barely) in my foot... I never felt it. I didn't know about it until I saw it. Who knows how long it was there??? Oww! (I do have updated tetnus shots, and I didn't see anything on my foot.) Hope that helps!

Thanks for the post.

Hi, I just looked up the diagnostic criteria for Fibromyalgia, and it does say it has to be on both sides of the body. I am not sure what you describe sounds like fibro. What kind of pain is it??? Can you tell if it is muscular, nerve, bone, etc. What does it feel like throbbing, shooting, aching, etc.??? I wonder if it is purely one sided if it is not more related to Chiari and scoliosis that you have listed as diagnoses??? If you google radiculopathy- does that sound like the pain you have? Do you know if you have pinched nerves etc? The redness I am not sure about... It could be a sign of increased blood flow to the skin on the affected side. Possibly due to pain, inflammation, or an overall "miscommunication" of nervous system on that side??? There also is the pain associated with Chiari that I am not real familiar with. The suggestion that it could be Shingles or Herpes Zoster is also a good idea. Does that sound like a possibility? I hope you can get some answers at CC!!! Who are you seeing?

Hi everyone! I don't remember this coming up before (if it has... whoops!) . But, I was wondering if anyone has any knowledge or experience with Hyperbaric Oxygen Therapy??? I have not seen anything about it being used with patients with dysautonomia etc. But, it has started being used with a variety of diagnoses, including Lyme disease, CP, autism, brain injury etc... I came up with this question after watching an interview on a daytime talk show with Jenny McCarthy saying that she has had great results using it herself, and that it is being used with children with autism. It is obviously very expensive, and the machines are few and far between. But, I wonder if it would have any positive results in patients such as us, due to increased oxygenation, increased oxygen to brain, decreased HR, arterial vasoconstriction etc... But, this is only when you are in the machine and it is done laying down. I just did a quick search so far, and have not found a whole lot on the topic. One link I found on the "medical" side of it is below: http://emedicine.medscape.com/article/1297731-overview Curious about anyone's knowledge or experience with HBOT...

Hi, I know there has been some talk about this before, but it has recently got really annoying again for me, and was wondering if anyone had any tidbits of knowledge or how many people experience this??? It is really hard to describe, because after the fact I do not remember much of what went on, but I know for the most part I have a hard time getting to sleep and staying asleep. I used to never dream (or at least remember anything), and since being on some of these meds (some worse than others) cause more vivid and memorable dreams. There is a lot more of dreams that seem to go all night and make me wake up more tired than I went to bed. Recently there have been a few that occur over and over, one dream is this hilly highway with a lot of cars and semi trucks... one of the semis jackknifes another one hits the breaks hard runs into the other. More semis jackknife and all of the cars are left to try to get through the maze... I am driving a car, and someone else I know is in a car behind me. So, it seems sometimes like all night I am making my way through this dream or similar ones. They are exhausting!!! I actually think I had this dream over 5 times before I remembered it during the day, and even now it took me a while to remember it. It is weird... I have also been getting a lot more of the falling sensation as you go off to sleep. It isn't like when you nod off in class and startle awake, but the feeling like you are falling many feet (like off the bed). This does wonders for startling me and jumpstarting an ANS overreaction when I don't need it (not that I often do ). Sometimes this is multiple times a night... It is very annoying! Do others get this often? Also, I see quite abit on here about narcolepsy and cataplexy, but I don't really think that I understand the whole spectrum of these disorders. Is there a good place of info anyone can recommend? How do most of you who have this or think may have it symptoms go? Sounds like many don't appear like the "average" narcoleptic?... I used to fall asleep VERY easily during the day whenever sitting. In high school I could nod on and off a whole class period, every period, it was bad!!!!!! And I was in the front row, right next to the teacher. Very similar situation in undergrad, I actually think I slept through about 80% of Biology. I had the same problem some in grad school, but was normally when I just had a med adjustment. I also would continously nod off during standardized tests!!!!!!! I fell asleep during the state testing to move on a grade, I think for minutes at a time. I fell asleep like 30 TIMES during the PSAT. I also managed to nod off a couple times while taking the SAT!!! This was always so frustrating... I actually tried to keep mints and hard candy for something to do and a burst of sugar in my backpack during high school. I only helped a little! Thanks for any insight!!!!! (or me too stories! )

Hi, Thanks again for everyones replies! I have been brainstorming the whole how to make the tilting of the bed work, and I did come up with the idea to use a headboard as the footboard. The bed would look really weird like that, but tall enough footboards are hard to find. Otherwise I haven't had any brilliant ideas. (Sophia, (and anyone with any knowledge on topic) So, tilting the head of the bed has only been found to work in those with supine hypertension? I don't get hypertensive, but have supine hyperkinetic circulation. (not sure if tilting is supposed to help this as well?) I know I did not tolerate tilting the bed previously and it was only 3 inches... But the dr. talked me into trying it again... No dr. has mentioned dDVAP to me... I may have to ask? ) It still seems like my brain is going in a million directions... I think I may order the compression hose online... Not sure yet. I wish I would get the results of that blood test! I also see the allergist for the first time next week. I hope that it goes pretty well, and that I can get some answers to my multitude of questions. I also have a derm. appmt in a month or so, AND an appmt. with a sleep dr FINALLY!!!! Have yet to hear if the one secretary FINALLY scheduled my rheum. appmt... I should have heard by now, and I already had called her.

Hi, Thanks for everyones replies. I know I didn't end up having much in the way of questions... I just needed to vent etc... Thanks for all your understanding! So, I guess for now the focus is on blood pooling and to minimize that. So, I have gone and bought some abdominal compression that I thought I may be able to stand. I have not gotten to the medical supply store to get fitted for the thigh high compression hose yet... Do those who do thigh high stockings get it in extra high stocking form or like pantyhose? I am still adjusting to the increase in Cymbalta, so I haven't been quick to add all this in yet. I do have to say though that the skipped, fluttery, knock your breathe out type heart beats that I had at the beginning of increasing of the dose have pretty much gone away!!! Wahoo!!! I don't know that I see much improvement though on the higher dose... What dose of Cymbalta do you find helpful??? (those that take it- I know everyone is different ) Logistics question: Those who tilt the head of the bed to decrease fluid loss over night and tilt the bed 6-10 inches, what is the best way to accomplish this? I have two beds (my apartment and parents house) one is a twin with no head or footboard and the other is a full size with a head and foot board that is not high enough to keep me from sliding off the bed. So, I have to "fix" both to tilt the 6-10 inches. Any cheap suggestions? I am really not sure how to accomplish this, because that is quite an incline! How do you all do it? I have 4 bed risers (2 for each) that are 8 inches to go under the head of the bed. The problem is the foot of the bed... and not finding myself slidding onto the floor!!! Need any and all suggestions! And for the most recent blood test I was/am worried because it is a fatal disease that does not give a very long projected survival time after diagnosis, even after a liver transplant. So, I know it is not likely and everything, but it is an awful thought... AND that it is FAMILIAL.... I think that is all for now... I know I had a couple questions I can't remember...

Hi again! I have been meaning to post for days, but haven't had the time and energy. I am still trying to process everything as well. Plus, I am having to deal with my own personal drama at the same time that there is a lot of family drama (due to loss of job of primary breadwinner, possible move, and family not understanding my limitations), so I feel overwhelmed and like everything is everywhere... There is too much to concentrate on and deal with, so I needed a little vent... So, I went back up to Cleveland. My big bunch of blood tests are all back and from what I could read on the impossible printout they gave me, and what the dr. said they all came back good (negative). He went over my test results from my previous Cleveland trip a little bit (TTT, Hemodynamic TTT, and QSART, but I wish there had been more time because I still don't feel I understand everything. But, it did back up previous diagnoses/tests that I have small fiber neuropathy and POTS. The mechanism of the small fiber neuropathy is still unknown and am told pretty much all testing has been done to find out what is causing it and no answers, so I will likely NEVER know. (although that is common, I pretty much already knew it etc., it is still hard to hear). But, for me they are saying that the cause of POTS symptoms is pretty much all due to blood pooling (supine, standing, and sitting). The pooling is due to the blood vessels not constricting properly, possibly due to EDS, but also likely due to the small fiber neuropathy- which affects the small nerves that control constriction/dilation of blood vessels. Good news was that I don't have signs of autonomic failure (I was worried, so that is good) and that everything neuropathy wise is distal and not much degeneration proximal. I thought it was weird/interesting that I pool so much supine, and or less I misunderstood it still pools in my legs/feet and not what is lowest to the ground. So, I am about to join the compression crowd, have to tilt the head of the bed, work on exercising more, and adding Florinef. Possibly change to Propranolol later... I also talked to him about more family history I have learned or forgot on the last visit. After telling him, he said there was one other blood test they could do. Now that has me a little worried, I feel it will likely come back negative like he said, but the possibility that it is familial amyloidosis does have me worried... Also, looking more at possible autoimmune cause... I had other stuff I wanted to post, but this is already so longgg.... So, I will have to add it later. Thanks for letting me vent and share with all of you! If anyone has any pearls of wisdom on any of this please let me know!

Congratulations!!! I don't have any words of wisdom, but I hope that everything goes well for you and your baby! Hopefully you will start to have less symptoms soon!

Hi, Especially because you are located relatively close to quite a few knowledgeable drs., and that you want more answers, I would say that you may want to see a specialist. You are pretty close to Dr. Stewart etc... could you see them? Or someone else that is listed in NY. I think there are good drs. in PA and in Boston as well. I think that you should be able to find and get in to see someone that can offer further testing and answers. Which tests always depend on where you go and your symptoms, history etc....

Goodness! It sounds like you are dealing with a lot. When I get to where you are in frustration/symptoms/lack of energy etc. I tend to just have to step back, try and get a couple days worth of decent sleep. And take everything in small baby steps. Start with the most basic necessities... Sleep. Work to eat the best that I can, drink plenty of water, and consume plenty of salt. Then make sure to normalize (because I tend to get it out of whack) my med schedule. And I tend to stop taking my vitamins etc. So, to try and get all that back and stabilized. Then, try to get on a semi-normal sleep schedule- which does not tend to ever work for me, but it can help. Could the Provigil be doing more harm than good? As in do you think it is making you feel worse, with rebounds etc? Maybe it is something to talk to your dr. about. How has your blood sugar been running? Has it been staying relatively controlled? If not this, is probably a point of focus. If your current drs. are of no help, you may need to look for ones that are of more help. I hope that things start to fall together soon for ya!

Wow! Congrats on the great preparation and execution of your laundry! And the description made it really easy to see where you are coming from. I can never prepare that well AND have it go as planned! As far as doing laundry goes... I live in a 2nd floor apt. with no laundry facilities. SO... I (once a month or so- sad, I know! ) have to carry it all down the stairs and load it in the car. I could take it to a laundrymat etc., but because of the sitting/waiting/heat etc. I REALLY prefer not to... So, I take home to my parents house to do it. So, I have to carry it all inside (normally have help ) and I work on it over a week or so. I just do the norm wash (top load) and dryer. I can't stand the heat the dryer puts out, or all the bending, standing, lifting, and carrying, so it tends to take a while or REALLY wear me out or both... I really don't like standing to hang up clothes, so that tends to be last and sometimes I never get to it. When I do it is in my bedroom and not the laundry room. Sometimes things get folded, sometimes things just get worn/used from the basket. I seriously dislike laundry!!!! (and DISHES!!!)