Katybug

Interesting. Robitussin makes me completely wired. I think it must make my adrenaline surges worse. But, I can see how it could help someone that doesn't react to it like I do.

ChistyD, I was given the nitro during my test and I think it was because I was actually sent for the test specifically to check for neurocardiogenic syncope and I think they use the nitro to artificially drive your HR up to see if you have a sudden fall in BP. I just so happens that my results were consistent with POTS instead.

The TTT will probably make you feel sick...whatever symptoms you tend to get when your suspected POTS flares up and you have an acute attack. But, keep in mind that getting an official diagnosis is worth it. It will help your doctors give you better and more accurate treatment and (I read your other post about school) it will allow your parents to deal more easily with your school situation. Here's how my first TTT went: They put an IV in my arm in case they needed to give me any meds. Then, they hooks me up to the monitors and took my resting vital signs. They strapped me to the table and tilted me up. At 3 mins. my tachycardia made my symptoms start and the nurses told me to keep telling them all the symptoms I was experiencing. I did not experience any symptoms that I had never felt before. At the 35 minute mark, they did give me the sublingual nitro because me heart rate was starting to drop finally. All this did was make me symptomatic again because it spiked my heart rate again. At the 45 min. mark they put me down and gave me soda and cookies once I was feeling a bit better. Good luck on your test. Katie

Not that I ever want to hear there are more things wrong with anyone here....but, it's great that you are making diagnostic progress and you are finding treatments that are making you feel better. Every little bit of feeling better is great! I'm really happy to read your post too. You sound so much more upbeat and hopeful.

DBP4620, I am now on Depakote daily as a preventative and it is working (I went from having 2-4 migraines a week to only having about 2 mild ones a month and I've only been on it 2 months.) I did try Topamax but it sent me into orbit with my POTS...really awful! I also have a prescription for Maxalt MLT for the occassions when I so still get a migraine and this does work well for me in alleviating the acute symptoms. jenwic, I was thinking...have you seen a neurologist that specializes in headaches? This might be a good next step as I have found since my POTS dx that there are quite a variety of migraines and even other types of headaches and even more possible treatments. Also, if your insurance will cover it, you may want to see a chiropractor for the headaches until you can get a handle on them. I swear my chiro is the only thing that kept me going for as long as I did (4 yrs) trying to get a dx for all this crazy stuff.

Yeah...my neuro insists the ear problems are not related to the dysautonomia but it started when all my other symptoms did and it is worse when all my other symptoms are worse. Soooo....since none of the docs can give me a good explanation of what it is, I still believe it is related to the POTS. In fact, it feels like the tinnitis, pain, and whooshing is related to the blood flow some how for me. I have seen information that dysautonomia can make you very noise sensitive so I just don't understand why the docs insist that the other ear issues can't also be related. Anyway, I hope all your appts and tests go well. Katie

My hearing gets very fuzzy (like I'm hearing everything through a very long tunnel and can hear people talking but not what they're saying) when I am close to passing out. Since my hearing has been tested and is really good, I have always chalked this up to the lack of oxygen to my brain during an acute pre-syncopal episode. But, of course, being able to explain it doesn't make it less scary when it's happening to you.

I have adrenaline surges but I also do NOT have orthostatic hypotension or hypertension, however, my blood pools in my legs...you can watch me change colors...my legs get pink/red/purple and my face gets ashen as the blood goes south . It happens that salt and compression help me but I agree with you , julie...I think we each need to be treated as individuals. All you have to do is read this forum for a day to realize how much we are each alike and yet how much we are different. And when you add in the other diseases/conditions that seem to regularly come up with us, I really think it is impossible to expect that we will all react well to these things. Look at how many people on this forum can't even tolerate the exact meds that they use as front line treatment for POTS....it's kind of scary.

Rich, My POTS neurologist did the sweat test and breathing tests. I have been tested for autoimmune issues by several of the 24 docs I have seen in the last 4 years because I symptomatically fit several autoimmune diseases. Most recently my POTS neuro re-ordered several blood tests for autoimmune indicators but I have also had it done by an 2 Infectious Disease Specialists, Rheumy, & 2 PCPs. They just can't figure it out. Katie

Here's a list of tests they've run on me (brain foggy these days so may not inc. everything): Exercise stress test Cardiac sonogram (evaluate heart abnormalities like mitral valve prolapse) MRI and MRA to rule out MS, Parkinson's, aneurism, tumors, other brain and or vascular brain abnormalities Bloodwork to rule in/out autoimmune disease, B12 deficiency, AIDS, celiac, syphillis, tick-borne illness, heavy metal poisoning, thyroid issues, adrenal issues (Cushings/Addisons), ECG (?) to rule out seizure disorders (I think its ECG but they hook electrodes that monitor your brain waves all over your head and do various things like different sounds etc. to see if you have any seizure activity. Easy and painless.) I was sent for sleep studies (nighttime and daytime). After receiving the POTS dx via tilt table test which was run by cardiologist, the POTS specialist ran the following tests specific to dysautonomia: TTT that continuously monitors heart rate and BP (as opposed to standard TTT that takes readings about every 3-5 minutes). Breathing tests to see if different breathing patterns changed my BP or HR. Sweat Test to check for neuropathy

Hi tinks, Can you let us know if the ENT finds anything interesting with your ear? I have all those symptoms too but they can only tell me I have the best hearing they've ever seen (a very annoying symptom of dysautonomia...not a gift as they seem to see it). They can't find anything "wrong". Good luck on the MRA. My neuro's note basically indicated that he was checking for an aneurism and I was totally freaked about it until the radiologist assured me that he did not see anything at all. The anticipation is the worst part. Katie

Sounds like potential migraine and it is common for POTSies to also have migraines. When my POTS symptoms are worse, so are the headaches. But, some antibiotics can also cause headaches...did the headaches get worse before or after starting the meds? If it started after, it may be worth trying a different antibiotic if possible. You might try an ice pack on the back of your neck (wrapped in towel of course) to sooth the headache (mine also radiate from back there and cause lots of heat and inflammation at the base of my skull). Also, there are muscles at the base of your skull that tend to get very tight when the headaches get bad. My chiropractor works on them but also suggests that I use a tennis ball to give myself an easy massage/trigger point treatment at home. Sit in a high backed chair and place the tennis ball where you feel the muscle pain at the base of your skull. You can move your head back and forth to give a massaging feeling or you can stop on any spots that are particularly painful and just press the tennis ball into the back of the chair and stay stationary on that point until it starts to feel like its loosening (about 90 seconds usually). Its amazing how much relief this can provide.

Hi Lette, I do experience this but not to the point that I have needed to go to the hospital (that must have been awful!) When I go through episodes of vomiting (and they almost always start in the middle of the night waking me form my sleep), they are super acidic and I have chemical burns in my throat and mouth for days. I have occassionally also vomitted small amounts of blood from the irritation. I also get the really bad pain with it and sometimes it is followed by diarrhea which is also extremely acidic and leaves what feels like chemical burns. Here are my suggestions: 1) Stay on the bland diet, not just to keep from vomitting again until your tummy feels better, but also to let the acid burns heal. Be careful not to eat or dring anything (like juice) that has its own acidity. 2) I do find that eating yogurt helps both replenish the probiotics but also coats my mouth and throat until the burns heal. You can also try something along the lines of Pepto to coat your mouth, throat, and tummy from the acid. 3) Get with your PCP or GI to get something you can take at home to stop the vomiting and the pain early in the process. I get into a vicious cycle if I don't start taking my promethazine (for vomitting, which they also make in suppository form if you are vomitting and can't keep a pill down) and my belladonna (for severe cramping and diarrhea) early in the process. The more and longer I vomit, the worse it gets...like my body can't shut it off and I need the meds to reset my system. I usually only need to take a couple of days of meds to get me back on track. Also, you mention that morphine did nothing for you. When I had emergency surgery for a kidney stone, they gave me morphine and it did less than nothing and they had to put me on dilaudid. Wonder what that's about. I am betting the adrenaline surges has something to do with that. Just a guess. I totally get how miserable the stomach stuff is and also how scary as I have woken up on my bathroom floor hours later wondering what happened. I hope you feel better very very soon. Katie

Welcome back!

Rich, I find that I don't got any hotter in these than regular socks. The material is more about what is comfortable for you and what type of shoes you are wearing. If you are in a large city, you should be able to find a medical pharmacy where you can go and feel the different fabrics (even if you don't buy from them due to price). This is another one of those issues for POTS patients that is going to take some trial and error. I will say this...I was skeptical that the $10-$15 sport sock options I found online would work or hold up in the wash. I have been pleasantly surprised to find they work and wash well as long as you don't put them in the dryer (just hang dry). Katie

Welcome to our circle of friends!! Katie

Great news, potsgirl93! Keep us posted!

FMLA only protects you if you have worked for the company for at least a year. You may still have legal recourse with the prior company that fired you after working for 14 months (there is also a number of hours you would have had to have worked in addition to having been there a year and I can't recall what that number is). It might be worth speaking to a lawyer about that company. I agree with potsgirl that it would be wise to apply for SS Disability if your doctor will back you up that you are not able to work with any regularity. It takes a while for this process and the worst they can say is no. The emotional roller coaster is the cruelest part of this disorder. Hang in there and know you have friends here.... Katie

My list that keeps coming up is: Thyroid issues MCAD/mast cell issues EDS Tick Borne illness aftermath AUtoimmune something of unknown origin Definitely feels like I've become a medical detective!

dizzyblonde, I get exactly what you are describing...but it's only on my palms, the back of my hands look and feel normal. More weird stuff...I took pictures of my palms the other day for just this reason so I can show the docs. Katie

Rich, Try the website for "Discount Surgical Supplies". They have a wide range of options for men and women in various price ranges. They have compressions socks that look like cotton sport socks but are knee highs that do actually work (I have them to wear with my sneakers). My cardio had me start w/ the 15-20 mmhg which is a light medium compression. She said we could work up from there if need be. Katie

Best of luck! You'll be fine. Let us know how it goes.

GingerA, I thought I was out of control too because of the fast food cravings...I just didn't understand it. But, then I looked up the nutrition info on a Whopper Jr value meal (with the small size fries and coke) and it has over 900 mg of sodium. That was the lowest sodium count I found for any value meal at any of the fast food chains in my area. I had thought it was that my blood sugar was low and the fast food was just a convenient way to fix that, but, I don't feel like low blood sugar symptoms when I get these cravings most of the time but I definitely feel physically better after eating these foods. I have also noticed that if I eat prepared foods that have excessively high sodium counts at home that I feel so much better (for example, a Thai Kitchen Mushroom Noodle Bowl which has over 500 mg of sodium but no MSG ). There are also some frozen dinners and individual pizzas that have surprisingly high sodium counts. I just can't salt my food enough to get this kind of sodium loading and still have edible food. I try to only do this mid-day when I need a boost and eat healthy in the morning and dinner.

Potsgirl93, It's awesome that you are doing this in your area. Hope it is a success! Katie

Kate, I have episodes like this that last from 2-8 weeks at a time. I can't eat meat at all during those periods because I can't digest it and I can usually manage to eat a total of about 1 cup of food a day and it has to be bland. In addition to the nausea/vomitting, I also usually get abdominal pain and diarrhea at some point with it (but it usually starts with the nausea/vomiting). Hopefully not TMI...but mine is very acidic...like I feel like I have chemical burns for days in my throat and mouth after vomiting. The docs can't explain it. I have a Phenergan (promethazine) prescription that is written for an "as needed" frequency to stop the nausea and vomitting (this allows me to keep it on hand for these episodes.) It is the only thing that helps me. It does make me drowsy so I try to take the dose at night but, to be honest, I am usually so sick during these episodes that if I sleep during the day it doesn't really matter cause I wouldn't be able to do anything without the meds anyway. Also, since it sounds like you have some allergies/intolerances, taking promethazine might be a good option for you during a flare up like this because it is an antihistamine. Probably worth talking to the docs about it. I hope you feel better really soon (I missed Turkey Day last year because of exactly this issue and it ******.) My thoughts are with you for a speedy solution to this particular problem. Katie