Katybug

Thanks

Thanks ladies! I'm gonna try the magnesium and riboflavin first. If it doesn't help I'll go for the steroids (I'm trying to avoid the steroids if possible cause I just finally got blood work that is actually showing abnormalities and I don't want to have to go for follow ups with steroids in me.) I also talked to one of my friends and she has to take phenylbarbital for her migraines, so I am going to try one of those tonight since I have them for my lower GI issues. I'll let you know if that works too...can never hurt to have another option in your arsenal! While we're on this subject, do you (your son) get earaches with your migraines? I have been having earaches with them with increasing frequency and severity (and the fluttering of my eardrum) but I have had the docs check and my ears seem fine by normal standards.

I had to stop taking sleep meds because they made me have extra vivid, extra real nightmares that would make me wake up having panic attacks until I realized that what had happened was in my dreams. On a happier note, I have the kind of dreams you are describing when they anesthetize me using Demoral (so I request it when possible from the anesthesiologist). I think its not unusual to have your dreams affected by your medications.

Ok, I'm on day #7 of a migraine. I am on Depakote as a preventative which seemed to be working wonders for the 1st 3 weeks I was on it. Then, last Tuesday it started. It has been lingering, sometimes better, sometimes worse, since then. I take Maxalt MLT for acute migraine and have been taking 2 a day since last Tuesday but I will run out soon and they will not refill this med early. I have also been taking Tylenol to keep the edge knocked off. I've done ice packs, heating pads, no light, normal light, no noise. It isn't the worst I've ever had pain wise, but, it is definitely the longest and I would really like it to go away now. Anyone have any home remedies I haven't tried? I don't even feel like calling the doctor cause we've already tried most meds.

Also, my cardio said that most BB take about 3 wks to take there full affect and she wouldn't be surprised if I didn't feel anything until I got near the end of the 3rd wk. Maybe he is in an adjustment phase?? Here's a link on info re: Atenolol. It certainly looks like it could cause his symptoms... http://www.drugs.com/atenolol.html

Hi! I have the same script for my compressions. They are supposed to help prevent so much blood pooling in your legs. I don't see any difference in my pulse but there are days when they do really help enable me to be more mobile...like if I feel well enough to walk the dog, I put them on and it seems my body doesn't have to work quite as hard to pump the blood out of my legs. I can tell a difference between wearing them vs. not wearing them while doing the same activity. I also thought I noticed that my legs were skinnier after wearing them. If you asked me if I was retaining fluid in my legs, I would have said no, but there is a difference in the size of my legs after I've had them on. You can even measure it with a tape measure to see if it is doing its job. Measure before and after wearing. My measurements changed most noticeably around my mid-calf and my ankle. I really had just thought my legs were getting fatter like the rest of me! But, it was fluid build up.

Alicia, No, I haven't had a problem with Tylenol but that doesn't mean you couldn't. I am severely allergic to Ibuprofen (found that out when I was 12) and the docs and nurses all look at me like I'm a freak when I say that (I guess its not that common). You know most of these analgesic/anti-inflammatory meds thin blood to some extent. If you were reacting to the Tylenol, maybe that has something to do with it? Hoping this was just a coincidence for you. Katie

Alyssa, I was just saying this in kcmom's post. A beta blocker can cause your BP to fluctuate and increase. In theory, that's not all bad if you have POTS because most of us with POTS don't get the BP increase when we stand up that should be causing our heart rate to come down if we were functioning correctly. But, if your heart rate isn't coming down, you can still faint. Also, too much fluctuation in your BP can cause you to faint or feel pretty bad. I'm on the lowest dose of my BB and the cardio and neuro will not up the dose because it did bring my HR down a small bit but it made my BP start to fluctuate too much. It hasn't made me sick but they are afraid that upping the dose will be enough to push me over the edge. Is there a lower dose of your BB that you can take to see if that evens things out?

kcmom, When I started my beta blocker, Metoprolol, I had very even, all be it, relatively low BP...usually 90/60. The BB made my heart rate come down about 10 beats per minute laying, standing, and sitting, but, it made my BP start to flucuate. Not wildly, but it was noticed by the cardio and the neuro. It hasn't made my symptoms worse, but, they have decided that upping my dose (I'm as low dose as you can get) is not a good idea because they suspect it will cause too much fluctuation and will cause my symptoms to worsen. I have found that the only way to tell what's happening is to be very cautious to only change one thing at a time and that includes my level of activity and my diet so I can figure out what is causing my problems. Of course, some days there's no telling what's causing the problem. I hope this works itself out for him.

Hi Naomi, I'm so sorry to hear about the let down. Every time I go for any sort of test, I get my hopes up and I have continually been disappointed. Its really just ***** every time. I can never decide whether to be sad or angry. But, I don't think you should stop searching if you think something is wrong. I've been tested once or twice a year for thyroid issues since all of this started and because both my grandmother, mother, and older sister all have had thyroid issues. I've also been tested for autoimmune stuff since I was a kid to no result. Low and behold, I got the results of bloodwork from last week on Friday and they not only showed seriously elevated T3 but a few other non-thyroid related issues. A total fluke! The first set of blookwork from last week came back with nothing wrong as normal and I was totally ready to be disappointed again, but, then it happened! It was like a present! I just keep telling myself that autoimmune issues (which I totally believe I have) can test negative for years before you finally start getting labs that prove it. Go with your gut and know you always have allies here!

s-pot, I was also thinking (because I do a lot of vomiting too because of POTS) that someone on here mentioned drinking a cup of boullion every day. That will get you a large salt load and fluids at the same time and maybe your tummy can take it since its liquid?? Worth a try (but I would make sure you get boullion that has no MSG in it.) Good luck, Katie

Kate2011, Dysautonomia can be either...inherited (although this seems to be hard to prove, maybe ernie might be able to chime in if he reads this) or it can be caused by a specific event like illness, trauma, surgery. I have had some features since childhood but I didn't have disabling symptoms until I contracted some tick-borne illnesses. Since, then I have been seriously ill. There is also some family history but no one else was ever diagnosed so we can only go on assumptions about it now we are aware of what dysautonomia looks like. Katie

s-pot, Sorry for the relapse. It sounds like you're doing the basics. Are you wearing compression stockings to class? Also, maybe your meds need to be adjusted for the change in your activity?? Hope you feel better soon, Katie

dizzyblonde Kate - Welcome aboard! Kate2011 - I have had the EMG on my legs and it didn't show anything. Although, I definitely felt like one of Frankenstein's experiments while I was having it. It wasn't a pleasant test but it was tolerable. I just have a feeling this "falling asleep" has to do with blood flow and not with the nerves.

Tara, I can't remember...have your docs considered some sort of mast cell disorder...I know you have said that they have done extensive autoimmune testing on you but my POTS memory doesn't stay with me too long...

Hi Misstraci, I've had them too. I also get a lot of visual disturbance with mine. I've had to pull off the road and call my mom to come pick me up because I couldn't recover from them. I usually have a bad bout of tachycardia with it and I shake for hours. Once the hot flash stops, then I am usually chilled for hours too.

Hi Bren, Some days my compression stockings make me better, other days I can't get them off fast enough. I can't really tell what that's about. But, I also can't wear regular bras anymore because I can not take that band of pressure around my torso right under my heart. It totally sets off my POTS symptoms. So, in finding alternatives, I have discovered that wearing body shaping camisoles that have a bra built in (cups but no back strap) actually makes me feel better. The compression distributed evenly around my whole torso does something to help me and it solves the bra problem. I think its that compression around my abdomen that helps since I get a lot of pooling in my gut. Hope you find a good combo! Katie

Yep...have had Lyme and Babesia and also have chronically low temp. 97.1 is my normal temp these days. The only time in 4 yrs I have gotten a fever was when my kidneys shut down and I became septic from having a kidney stone lodged in a ureter (caused a horrendous inflammatory reaction which caused the kidney issues and infection.) I was really, really sick and in the hospital for several days. I was also just reading that chronically low temp can also be a symptom of thyroid issues (which I just found out I have).

The POTS doc says the whole thing is the ultimate result of the blood pooling. He says the stabbing pain is most likely because my gut is "turned on" to digest stuff that isn't there because it has received a large dose of blood for no good reason. So, the good news is that if it gets really bad (like in the fetal position on the bathroom floor bad), I have a Belladonna (barbituate) prescription that I can take and it makes it go away in about 45 mins. As a wonderful side effect of this med, it makes all my symptoms go away for anywhere from 8-24 hours because it depresses your nervous system. The bad news is, its addictive, of course, so I try to only use it when things are really painful and I just can't take it. I'll admit being tempted to take it on just bad POTS days, but I haven't caved in because I just don't want to end up physically addicted to meds because of this thing. This is actually one of my major "moral" dilemmas I struggle with.

Wow lissy...I have been having this thought a lot recently. I feel like we all have some disease that they haven't named yet and that it's gonna end up being autoimmune. I just feel like, "how can this many of us have the same symptoms, complaints, weirdisms, and not have something they just haven't found/named yet?" I feel like a philosophy student, "If it the disease doesn't have a name, does it really exist?" I say YES!

I'm with the group that has been too ill to even have sex. BUT, thanks for posting this Tee! It's not an easy subject to talk about and I have wondered what the consequences would be if I ever get back to feeling well enough to find a boyfriend. (I can't even imagine having the energy to find the guy right now let alone getting to the sex part. )

Ooooo, I'll have to try the bullion soup...I hadn't thought of that! I've been staying with my mom since last November because of exactly this issue (plus the dizziness) because I lived by myself and it finally just got too dangerous. I would literally fall into the wall trying to walk...had bruises all over me. I know it's hard. Is there anyone that might be able to take you and your daughter to the park/other activities and allow you to sit while they monitor her (maybe even hire a babysitter for 2 hrs once or twice a wk for this kind of thing?) At least you could be present.... On a hopeful note...I went through a bout of this from mid-July to early-Oct (partially brought on by a new med) but now I am at least well enough to leave the house for about 2 hrs each day. I still have to get home at around the 2 hrs mark as I start to shake and get the dizzy, weak, drunk thing, BUT, it is better than being bed-ridden for 23 out of 24 hrs. My point is...this too shall pass.

I also have several severe drug allergies (we are just starting to investigate root causes for me). I was told in high school not to travel outside the US or Europe due to the limited antibiotics I can take. Have you been evaluated for mast cell disorders, specifically mast cell activation disorder (MCAD)? It sounds like it could be a worthwhile investigation given your severe allergies and the fact that you are about to run out of antibiotic options which isn't too good.

I have this on my really bad days. Its all I can do just to go from the bed to the bathroom...I have to hold on to something the whole time I'm up. I have had to sit down in the middle of showers because it will hit me all of a sudden and it feels like my legs simply are not going to support me anymore and my arms feel like they are a 100 lbs.. I feel the vibration too. The only place its ever visible at all is in my hands but sometimes I can feel it in my hands but its not bad enough to be visible. I wish I could tell you a good solution. I've had some luck with major salt loading (like I've asked my mom to go get me a Big Mac Meal cause there's sooo much salt in it that I can get a huge dose in one meal), compression stockings even while I'm laying in bed (but I don't sleep in them), Gatorade, and belive it or not...a cup of caffeinated coffee. I know the coffe is weird but if I do just one cup, it sometimes has the reverse affect of caffeine and actually slows me down...sometimes I have to dring a cup to fall asleep at night. (You know POTS...up is down, right is left. ) Some days though, the only thing that helps is staying in bed so I don't get worse. Hope you feel better soon.

I had 2 ttt: 1st was resting HR: 70 standing HR: 145 at 3 mins and stayed there the whole test, no change in BP 2nd was resting HR: 68 standing HR: 135 at 5 mins and stayed there the whole test, no change in BP