ajw4790

Hi, I guess I have to add to the me too crowd of not ever feeling "normal". BUT, at the same time I do not think I know what "normal" is... I have had some part of this all my life. I have always been tired, lethargic, etc... So, I don't think I know "normal" or my potential "normal", all I know is what I feel like on the majority of days. For me this is to the point of having enough energy to take care of myself (minimally-no frills, not get around enough to go outside on most days), keep the apartment from getting too disgusting (try to tackle a "project" or two a day), and do some "work" on the computer. Other than that I tend to run errands a day or two a week and spend the rest of the week recooperating. If I absolutely force myself up and to do things I am an absolute zombie, just going through the motions. I am not really emotionally or mentally there, only my physical self is really there. Sounds weird...

Hi, Sorry, I don't have experience with either. What you describe is stress incontinence. A lot of the control "down there" is at least partially ANS controlled, but some is voluntarily controlled muscle movement. So, it makes sense that the ANS part could be a little haywire with a dysautonomia diagnosis. Which may mean that you have to work on the voluntary part to compensate. Look up stress incontinence for exercises, tips, etc. to work on strengthening your voluntary control. For the eyes... you recently got some other diagnoses didn't you? (Sorry, I don't remember what they were...) But, could it be part of that? Sorry I can't be of more help.

Hi, Oh, goodness, that all sounds awful! I am glad things are getting better. It all sounds so complicated to juggle what to or not to take... But, it is hard to not take anything for severe pain! Thankful, I thought that was interesting about the histamine reaction with morphine. I bet that is what happened to me post-op. So, does that go in line with MCAD (mast cell disorder)?

Hi, I don't drink green tea, because I don't like it. But, I drink a lot of "normal" black tea (or black/orange pekoe tea). Tea is about all I drink besides water. The little spurts of caffeine helps me.

Hi, I have been prescribed Ambien, but haven't taken it. As far as carbs they can make the majority of us feel worse. About every one of my drs. have said to make sure to watch carbs/be on low carb diet. My meds make me crave sweets too. Avoiding carbs especially non-whole grain simple carbs are very important for blood sugar regulation, and other parts of ANS. Too many carbs an make people feel a lot worse.

Hi, I apologize, I just wrote a long reply and the computer lost it, so this one will be shorter and likely not as well thought out. I am opposite of ya'll in that the meds made me gain a lot of weight. But, I had some questions for ya. I worry when I see so many people so underweight, and how much more difficult it must make things. Make sure to not only try to keep your weight up, but to work on fluid volume (if your dr. has recommended). Do you think weight loss is med related? Some can cause anorexia and weight loss. Have you been checked for malabsoption issues? Endoscopy, gastric emptying etc. Look for leaky gut syndrome etc... Allergies? I hope that you all are able to find foods that you can tolerate and eat as much as you can.

Hi, Congratulations on finding some answers! I don't have any words of wisdom etc., but I think it is great when someone is able to get some answers to something that they have been dealing with like this.

Hi, Welcome! I second (or third) what has been said. Also, make sure if you haven't look into the TTT and to how much it will be and if the hospital/clinic has any financial aid available to help pay for the testing. Also, you may be able to find a cheaper place to get a TTT if the original place you are going to is very expensive. Based on that the cardio believes POTS is the diagnosis and your symptoms (which sound like POTS) you could if the dr. recommends start treatment for POTS to see if it helps you. In other words work to treat the symptoms and don't worry as much about a formal diagnosis. What does your dr. suggest treatment wise? If you still are unsure about the diagnosis, look through the board here at past posts and see if you feel that you are in a similar situation. Also, check out the DINET website for common symptoms, stories of people etc.

Hi, I don't have any specific experience, but I would say that it sounds like something that is going to take quite a while. I could see it taking months for your body to repair everything that had been done. It also seems like the type of thing where you may feel worse before you feel better. It will not be an instant thing, you will have to be patient. If you have specific questions on timeline etc. you should ask your dr.

Hi, I wanted to add that I used to be very anti-medication. It wasn't anxiety or that I was worried etc. It was that with my experience in the medical field, lack of a diagnosis (felt like they wanted to just throw things out there to see what would stick), and that I saw no reason or significant benefit from possibly taking medication. So, what changed? I got diagnoses, I found better doctors, and was so desperate for ANYTHING to help my symptoms and I wanted to try to stay in grad school (didn't work). So, I started taking meds. First for tremor... it took MONTHS to adjust to the med and I was an absolute ZOMBIE for these months. BUT, I kept taking it because I saw significant improvement in a symptom that was significantly affecting my daily life. Then I had my TTT etc. and dx'ed with POTS etc. and was started on SSRI's (took a while to find one I tolerated), but these too changed my quality of life quite dramatically, so I continued to take them. I was still FAR from asymptomatic etc., BUT I could now stay in the classroom without running out every five minutes to the bathroom, because I feel like I am going to puke everywhere, because they keep the place SO HOT! The list goes on to why I decided to take different meds. Neuropathy pain and other symptoms were so restricting and bothersome that I started taking Neurontin, which is great to take away the nerve pain etc. I still HATE that I have to take meds, but otherwise I am that much more miserable, so I just do what I have to do. I do not enjoy them, and always used to decline meds when offered by drs., but now I feel if they have a good reason for prescribing and my own research shows that for people like myself it has been found to help, then I will try it. Why not? And if it is side effects you are worried about etc. I have struck out on probably 20+ meds and had many side effects, but I still feel that if I am going to see any improvement I have to roll the dice and see of it works for me. Everyones bodies are different, and there is no answer to what will work for everyone. It is all trial and error. But, for decreased symptoms and a better quality of life I have to make myself try meds to see if they help. Not sure if that helps anyone, but that is just me!

Hi! Congratulations!!!

Hi, Yes, most of my days I experience very significant fatigue to the point of just doing normal daily survival activities (eat, sleep, sit, stand, go to bathroom, etc.) takes all I have. On these days I also try to get in at least one "project", but it can sometimes take me 4 days to actually complete that project. This can be anything from putting away laundry/load dishwasher to running errands like pick up prescriptions or groceries. I very rarely do anything that I don't HAVE to do (i.e. go somewhere for the heck of it, "fun" shopping, go places with friends, etc). I think fatigue of different levels is very commonly seen amongst us. It is frustrating etc., but for someone who has been this way pretty much as long as I can remember, I do not really know any different. This is and will likely always be a fact of life for me. I hope to just be able to at some point be able to do what is needed to survive and MAYBE get some kind of flexible part-time job that I can handle. But who knows what the future will bring? I feel slightly worse fatigue wise than 5 yrs ago, but overall that has been one of my most constant symptoms. As far as color changes... when tired, not sure, I don't think so... maybe a little less color. But, I do get white when I am feeling symptomatic/near fainting.

Hi, Mine appears genetic. I started having symptoms very young. If you are interested in this topic further, it has been discussed many times in different threads. To find old threads use the search feature on the bottom of the page. I just wanted to add this because many of the people who have posted here for a while that have answered this a few times may be less likely to respond. So, to get a better overall view looking at previous posts would be beneficial. There has been polls etc. on the topic.

Hi, All the meds you listed are different. Whoever said that was confused. What you were given was a beta blocker. Beta blockers most common use for people outside the POTS world is high blood pressure. Lyrica is very different and can be used for chronic pain, fibromyalgia etc. Elavil is an antidepressant also known as amitriptyiline (sp?) and can be used to treat fibromyalgia too.

Hi, Sorry, because I am kinda jumping in on futurehope's thread. Mack's Mom and others with experience/understanding of MCAD, I was wondering about if there is something "opposite" of MCAD in nature? I am curious because before whenever I have tried many of the meds that are used for MCAD I have had weird adverse reactions. Benadryl used to always wind me up (and not knock me out like it does to many- I haven't taken it in awhile to know how I respond now). Sudafed also always put me to sleep (and makes most others wired). Zantac (or possibly it was Tagament) gave me awful photosensitive migraines (actually probably my first one). I can't remember if Allegra is used for MCAD, but that gave me this very uncomfortable pain in my stomach. It was supposed to be one of those like one in a million chances of a side effect. Or could it be that my body was just needing an adjustment period to these drugs, due to that they were having such a profound effect? Most of the meds that I had the most severe and odd reactions to are meds used for MCAD. It just seems odd??? Anyone have any insight? Thanks!!!

Maxine, Sorry, I have no words of wisdom, but wanted to pop in and say that I hope that you start to feel better soon! I could not stand having that kind of a virus for so long on top of POTS etc. I would be thoroughly worn out! Have you seen any neuros. at Cleveland Clinic yet? I don't remember... Feel better soon!

Hi again! After your further description I do understand better where you are coming from. Not that the extreme cold feeling doesn't match POTS symptoms, but it made me wonder if your thyroid has been fully checked out? I know that feeling cold all the time can be a thyroid thing. And no its not complaining- it's the just the truth! Hope you are able to get more answers soon!

Wahoo!!! Congratulations!!! I hope you and your family get some answers!!!

Hi, Not sure. I take Atenolol, and see you used to take it. I haven't ever found the magical med that makes things good enough to return to work etc. Otherwise see my sig line to see meds. Can you check with other pharmacies, mail order, etc... Is there another manufacturer of the generic you can try? Are there no XL in metroprolol/lopressor etc. that you could try? Sorry I am not of much help!

Hi, From what I know and what you described if sounds the most like RA, but that it hasn't happened again etc. could mean it is something else. Other disorders and genetics can cause people to get the nodules in their joints. As far as how it would affect determining diagnosis or cause of POTS symptoms, I think it would lead towards that your POTS symptoms could be caused by an autoimmune issue. But, I am not sure that for most with this distinction that it has helped/changed their treatment any. Maybe try to find a specialty Rheumatologist that is more familiar with these kinds of things to do a more thorough workup? I have a lot of joint issues that really have gone overlooked. I am trying to get in to see a Rheum. but it has so far been difficult. I do have EDS though to explain some of the joint pain etc...

Hi, I am not sure I have a great answer... I know that the weather here has been messing with the way I feel. Also, hormones could maybe play a role? I tend to always run right around 120/80 or a smidge higher, so I don't have a lot of insight. I do get a lot of low BP reading when starting new meds, but you said you haven't changed anything like that. Has your diet or fluid consumption changed? Hope the dr. appmt goes well!

Hi, Welcome! I am not sure if I missed it in your info, but does your HR increase 30+ bpm upon standing? I know you mention a high supine HR, but even with that I think that your HR would have to increase 30+ bpm from supine to standing (or sit to stand). Otherwise it sounds more like IST or another condition causing increased HR. I might be mistaken, as I am not a dr. and the diagnostic criteria for all of these conditions can be confusing and vary place to place. But, from reading your background info I have to say (to me) you don't sound a lot like you fall under POTS criteria. But, it also maybe that you have other symptoms etc. not mentioned. Are you more symptomatic upon standing? Have dizziness/lightheadedness? Cognitive difficulties? Heart rates above 120? Feeling like going to pass out? Any gastro symptoms? Heat intolerance or becoming overheated with an increase of symptoms? It is hard to tell from a post or two to what a person is going through. But, I just wanted to throw it out there that I (just me) am not sure from what you talked about that POTS may be the one and only answer. A TTT would be an important next step in finding out your response to an upright posture. Good luck on finding answers!

Congratulations!!!!!! I am glad that you both are doing well! What an ordeal! Thanks for sharing your story! I know that it will help others!

Hi, I have to say no as well. I also don't think that physiologically that seems all that probable. It is more likely that some foods increase peripheral blood flow, that in turn may irritate/cause increased reaction of the peripheral nerves.

Hi, Sounds like peripheral neuropathy symptoms. The headache etc. sounds like coat hanger pain that develops into a headache. See recent posts on this, as well as search the forum for past posts using the search tool on the bottom of the page.