Katybug

I am up and down. Two weeks ago I would have said worse, but, now for the last week and a half, I've been well enough to leave the house for about 2 hrs. a day. So, I am just waiting to see what each day brings. Glad to hear about the stories of people getting better. It's something to hold on to.

Steven, Please know you are not alone and you are not crazy! Your story and mine are eerily similar. I was an Ops Mgr. for a Fortune 500 company 4 yrs ago. I started having all kinds of strange symptoms and was eventualy diagnosed with late stage Lyme, Babesia, and suspected Bartonella (although tests said no). I was treated by a Lyme specialist who subscribes to the ILADS treatment guidelines (I got the impression from your post that you most likely know what that is) and also with some herbal remedies. My symptoms would wax and wane. Last year at this time things took a turn for the worst and I eventually was diagnosed with POTS in Feb. of this year. The POTS specialist believes that the tick-borne illness precipitated the full blown autonomic dysfunction although there are some medical clues in my history that suggest there was a low lying autonomic or autoimmune issue lurking. I am now on disablility but believe there is hope. I know it is hard but please believe that you can get better. There will be rough times and you will find on this forum that most of us are familiar with the symptoms you describe because we have had some combination of them at one point or another. I just posted a thead a few days ago about chronic Lyme that you might be interested in. I named it "Information re:Bitoxin Illnesses". Here is the main link that was really interesting in case you aren't up for finding the other thread. http://www.betterhea...r-video-on-lyme http://www.publichealthalert.org/Articles/scottforsgren/biotoxin%20pathway.html If you need support this is a great place to find it. I would have been lost some days without this group of wonderful people to remind me how NOT crazy I am. Katie

Hi lieze, I don't have food sensitivities like you do but I do have major GI issues from this whole thing. I go through cycles. For 4-6 weeks I will not be able to eat anything without it coming back out violently in one direction or another and I have almost no appetite. Then, the autonomic switch must flip because all the vomiting and diarrhea stop and I become ravenous. I eat and eat and eat. It's feels like my body is trying to make up for the month when I couldn't eat anything substantial. This cycle coincides with my other symptoms...when I can't eat I also have the really bad pre-syncope, visual disturbances, racing heart, GI issues, shaking, tremors in my hands, etc. Its not a lack of food either. When I wake up in the morning, I'll have all the symptoms or almost no symptoms. I don't get low blood sugar and then have the other symptoms.

I'm with the other folks...I find walking at a steady but not too fast pace much easier than standing still or going up steps. I started trying to walk my dog only a couple days a week for about 10 mins. I have now worked up to almost every day (there are still the occassions when I can barelymake it to the bathroom in the morning) for about 20 mins. I do feel sick afterwards and have to lay down for an hour or so, but, I am making progress (and that's what's important physically and mentally). I also use the recumbent bike (not the full deal, just one of the pedaler devices that you sit in a chair and pedal). It was about $50 and much more affordable than the real deal. The doc says it will acomplish the same thing. He had me start slowly and work up the time each week. On some days I have to push myself. (The dog definitely helps my motivation with the walking as she nudges me with her nose at the "walking time".) There are, as I said, the occassions when I still can not do it, but, I do feel better on the days when I can manage to get it done and it has shown a steady progression of making me more functional.

persephone, The emotional roller coaster of the good times/bad times of POTS is really had for me too. But, I just try to remind myself to be grateful for the good days because some people don't get any good days. It sounds like you are doing what you can to recover. Pushing yourself but not too far. Do you have a recumbent bike or the pedalers where you can sit in a chair and pedal like your on a bike? I have found that it really helps to do this regularly but it is something I can do on most days that I can't walk. Glad you are starting to feel better.

I can not eat anything with Cilantro/Corriander or it gives me instant migraine and POTS flare. I also recently started having the same problem eating peppers - Bell, Cubanelle, and Poblano (I've never been into the hot ones). I suspect there may be other things that set me off but I haven't been able to weed out what it is. The flip side is I crave certain things (some weird things) that actually make my symptoms better when I am craving them - cider vinegar or balsamic vinegar, apples, bananas, brussel sprouts (in obscene quantities), and garlic.

IceSkate, DId you check the list of doctors that treat dysautonomia on this site? You may be able to find a doc on here. The list is in the POTS Place section of the site.

I tried Ambien and Lunesta. They helped me fall asleep but caused me to have awful nightmares that woke me up between 2-4:00 in the morning. The nightmares were so bad that I would wake up denched in sweat, shaking, and panicked. Hasn't happened before or since these meds. I decided the nightmares were worse than the hours spent trying to fall asleep.

Me, too! It's worse some days than others but I often have to lean against the wall to walk from the bed to the bathroom in the morning. I usually am bed-ridden on days that start out like this, or, at least can't function until 2-3:00 in the afternoon. Sorry your feeling lousy!

HI Lieze. Are your two older children able to help you take the clothes to the laundromat with your supervision? Or culd they participate in doing the laundry at your mom's house? That way neither you nor your mom would be doing the brunt of the work.

In researching "elevated C4a levels", I came across this information on Biotoxin Illnesses and thought there would be some folks here that might be interested. Here are some links: http://www.chronicneurotoxins.com/ http://www.betterhealthguy.com/joomla/blog/202-dr-ritchie-shoemaker-video-on-lyme (Video is interesting if you have Lyme or not) http://aboutmecfs.org.violet.arvixe.com/Conf/IACFS07IVClinicalStudies.aspx (Article regarding biotoxins/C4a about half way through) http://www.publichealthalert.org/Articles/scottforsgren/biotoxin%20pathway.html

I followed anna's link for oral erythma migrans and then followed a link from there...Have you been tested/evaluated for Crohn's disease and Lyme disease? I didn't know it,but after reading, Crohn's can affect your mouth and might also explain yor GI and weight loss issues. Also, Lyme can mimick many of these autoimmune diseases so if you ever do anything that would possibly expose you to ticks, it's worth the blood tests.

I often feel like when I try to look from one place to the next my eyeballs are a second behind the thought that I want to look somewhere else, like the muscles moved and then my eyeball had to catch up...does that make sense? I get this when I am having an acute pre-syncopal attack or I am really exhausted and need to rest. It is all part of the feeling that I am in a surrealist painting and I feel all warped and disoriented like the world around me is moving a few seconds faster than I am. It is definitely related to my POTS and my migraines which seem to be completely intertwined with each other. I have found that (when I am not experiencing a migraine when it happens), the only thing that helps me is to lie down and rest. With a migraine, I need to take acute migraine treatment (Maxalt MLT these days which is really working well) and I still need to ly down and rest.

Sorry you are in such a bad way. Many of us have been there and just know that you do have support and that most of these ridiculously bad episodes of POTS do pass, albeit not fast enough. I don't know where you are located but there is a list of doctors that specialize in dysatonomia broken out by state in the POTS Place link on this website. Maybe you can find a doc who is a specialist in your area that can help you while yor waiting for Mayo. I have bouts of vomiting and diarrhea that occassionally result in some blood from the strain on my GI tract and I know that assaulting my GI tract with antibiotics would make things worse. Do they actually believe you have a GI infection? Hope you find help soon...

Does it feel like the burning/hot sensation kind of "washes through" your upper body? Almost like when you have an IV and they inject a medicine into it that you can feel burn as it runs throuh your veins?

Tarastomsgirl, I am about to go for a battery of blood work (although I think Sue1234 has me beat if you've seen her 21 viles of blood thread ). If anything comes up, I'll let you know. One of the tests that I have had in the past that showed that there was definitely something wrong (although it isn't specific to just one disease) is my C4a factor. This is part of the "complement system" of your immune system. It is considered an inflammatory marker. (Normal is under 2000, mine was over 59,000.) When I showed my POTS doc this old test last week, he was right on getting me a full work up for autoimmune everything. I know its not a specific diagnosis of anything but it makes me feel better every time a test can at least document/prove I'm not making it all up. I also researched what C4a does/can do and it turns out that it does cause degranulation of mast cells thus precipitating inflammation, histamine rx, and anaphalaxis. So, I'm really curious if I will show up with mast cell issues. It would definitely explain the finger bumps. If your up for another blood test, getting a work up on your complement system might at least give you some more documentation. As a side note, I did have a yeast infection in my mouth when I was taking three antibiotics to treat my Lyme. Now that I think about it, it DID look very much like your tongue picture except there was more white on my tongue but I did have the patchiness too where it looked like my tastebuds were missing. The doc gave me an oral anti-yeast pill and it cleared up in a couple of days. If you haven't gone that route yet, it might be worth it as the treatment was easy and would at least rule out another thing on the list.

Lieze, Great news that it went ok! You made it through and it doesn't sound like your body is having a major bad reaction! That will be something to hold on to for your next treatment. I'm so glad it went well. Don't fret over the anxiety...you need to forgive yourself for that instead of beating yourself up over it. When you start to worry about the anxiety ask yourself, "What would God do?" Take care!

Hi potsgirl93! I get a lot of sensations in my chest (particularly the left side). The pressure goes through my whole chest. I get pretty intense pain on the left from my sternum through my shoulder and down around the outside of my breast. I haven't experienced numbness or tingling but I would imagine it is possible. So, please know you are not alone and it can be very scary. That being said, I have been monitored while experiencing this pain and know I'm not having anything dangerous in my heart. Because of our diagnosis with POTS and the kinds of medications we take, if this is new and it is worrisome, I encourage you to at least talk to your doctor. The doc would be the best person (other than you) to decide if you need to be checked out.

Good luck on your first treatment. I will think positive thoughts for you!

OMG! I can't believe it! I get the bumps on my fingers too! And, I also have not been able to find others who have them or get a diagnosis. I do not experience the tongue thing though. I have searched the internet high and low looking for pics of these finger bumps to no avail. (The closest thing I've seen have been some pics on lupus websites but there not quite the same.) I started getting the bumps when I was a sophomore in high school. I had what seemed to be a bad viral infection (mono/flu-like almost but tested negative for mono) except that I also got a rash all over my body and these bumps on my fingers. We (mom and I) went to multiple docs and none of them could give a better diagnosis than "an allergic type reaction to the viral infection". The bumps aren't horribly painful unless I bump them, then they can be a little sore/pinchy. They don't blister or change, they just appear and then disappear usually about 2-3 weeks after onset. I get these bumps every time I get a viral infection now (flu/colds). I occassionally get the bumps when I don't have any other signs of infection but I always assume I was exposed to something and just didn't get fully symptomatic. I have shown the bumps to docs over the years (when I get them) and have never gotten an answer. My POTS specialist and I discussed the finger bumps, along with other suspicious things in my history, and he is now sending me for a battery of autoimmune tests and various tests for mast cell disorders. Hopefully we find some answers and I will update this thread if anything comes of it. Can you link the original onset of these bumps to a particular event (illness/medication/etc.)? I almost feel like if we solve the finger bump mystery, we'll solve my whole medical mystery.

I go through cycles when this happens to me. It is definitely linked to my other dysautonomia symptoms. I choose the sleepiness over the vomiting as having to lay down and rest for 2-4 hours seems like a better and healthier option than the vomiting. I have had full GI testing and they found GERD, mild gastritis, and a small hiatal hernia (basically nothing that explains the extreme vomiting). I also have diarrhea and severe abdominal pain during the cycles. They have given my promethazine (pheregran) for the vomiting to take as needed and belladonna for the diarrhea/abdominal pain also as needed. I try to only use the meds (as they can be addictive) only when it gets severe so I can "break the cycle". Hope you feel better soon.

I am really sorry you are feeling this way emotionally right now. I think the emotional roller coaster is the hardest thing about this disorder. Its really hard to come to terms with what you can't do right now. I spent most of Aug., Sept., and the beginning of Oct. in bed or on the couch and it was awful. I just have had a 5 day "good day" streak where I have been able to leave the house for an hour or two by myself each day and it has been like getting out of jail. I am so thankful for the good days. I want to encourage you, as others have, to investigate all the medical possibilities fully and find doctors that specialize in the disorders/illnesses you have and who are compassionate. The right doctor (medically and emotionally) makes tons of difference. Keep pushing forward and know that there is hope and you are not alone. Katie

I don't know about the drug interactions but I am on metoprolol (beta blocker) which is also thought to help migraines to some degree. His migraines could be getting worse from his BP creeping up. Maybe that's another thing to chat with the cardio about. Hope he gets some relief....

Lieze, I know it sounds cliche, but, ONE thing at a time, one day at a time. Try to focus on the thing that has to be done next, not all of the things that have to be done. And, if you have any experience with meditation, try to find just 5 mins. a day to meditate so you can completely clear your mind. If you haven't done any meditation in the past, a really easy book to learn "everyday" meditation from is "Where ever you go, there you are" by Jon Kabat-Zinn. It teaches how to do meditation while doing everyday tasks. And, it has really short chapters and is an easy read. I was helped loads just by reading the book as it teaches being present in the current moment as opposed to living in the "what ifs".

Hi. I get your frustration. I feel like her email was patronizing which generally drives me crazy. I've gotten to the point where either my docs are full on in support of doing/trying anything that will give us answers or they simply are not my doctor any more. I don't have the mental or financial resources to put up with anything less at this point. As a side note, I did have catecholamine testing back in March which was ordered by my cardio (who is learning about POTS because of me but isn't well-versed yet). My neuro/POTS spec was going over those reults with me last week and said we will have to redo the testing because the lab didn't even come close to drawing the blood correctly. He asked if they laid me down..No, if they inserted the needle and then waited for 20 mins. before drawing the blood so the pain response to the needle wasn't affecting the results...No, and if they centerfuged the blood immediately and put it on ice...No. He said that there is a specific way to do these tests accurately and anything less does not give accurate information. SO, my lesson last week was to ask him how the tests should be done from now on and make sure they do it right at the lab. Thought this may be useful info for when you find a doc to order the tests.