lumpchp

Hi there, so sorry you went through all that. Unfortunately, it sounds familiar though. You mentioned midrodrine, are you taking any type of corticosteroid? I had a similar experience when I was put on florinef, but for me, the headache came first, then the spinning, cant move my head part. I know it also drains potassium too. I don't know much about midrodrine though, I wonder if pots alone can affect potassium levels...I always have nausea meds on hand just in case, because I tend to get that feeling allot, almost reminds me of my younger "drank too much" years when you get the spins. Don't feel bad for jumping in, I'm pretty new to all this, and the people here have been such a blessing, I don't think anyone will mind :-) As far as being in public, I have had several episodes, and I usually just ask for some water, it tends to give them something to do untill you can get the point across that this is"normal" for you. Good luck, keep posting, there is nothing but support here :-)

Hi, sorry your dealing with this. I was wondering if you had any issues or changes in vision? I work for an ophthalmologist, and have seen many patients with this who complain of light sensitivity, watery eyes, and eye pain and strain with reading, and eye movement. Sometimes this causes damage, and we don't want that to happen :-) if you notice any issues in that area, you should have an exam with a good ophthalmologist... Hope it goes away soon!

I know neurontin helps with nerve type pain, so if you don't have that type it probably won't do much but cause side effects. I got vision problems, dizziness, and was very unsteady. For me, I knew right away it wasn't going to help, so stopped taking it without any withdrawal.

Turtle, you just painted my picture! I have been wondering if I had EDS for some time. I don't have the bad brusing, but my 7 year old does, he is (pardon my term) circus freak bendy. My issues are mainly joints popping constantly, and ankles are terrible. Like you, many family members have signs/symptoms. Do you have any issues with ligaments or tendons? I'm nowhere near athletic, but my tendons tear and rupture spontaneously, I think its due to the collagen being defective... Skin is thin and stretcy too. I'll definitely be asking my rheumy about this, and my sons pediatrician. Keep us posted :-)

That doesn't sound right... From what I understand, a jump in heart rate over 20 points OR an increase to 120 is positive, regardless of bp drop. It is NOT normal for your heart rate to jump that much just from standing up! Many of us have seen multiple physicians and had many poor diagnoses before someone finally gets it right. Don't give up, and don't settle with the opinion of one doctor.

Wow, this sounds all too familiar. I am struggling with this myself. My husband is gone 2 weeks a month, leaving me to care for our boys, who are 12, 7, and 14 months... Symptoms are so bad right now that I often need my mom to care not only for my kids, but for me. I had a particularly bad episode at home with my two younger ones, my 7 yr old had to run and get a neighbor as I had passed out. Its almost surreal, I never would have thought I would need so much help, I've always been able to do it all, worked full time, be a wife and mother, no problem... Until pots came in to my life that is. I'm learning to take advantage of my good days, even if I have to pay for it later. The hardest part though is accepting help when it is offered. I think as women we tend to beat ourselves up if we need help, its in our nature to be care providers for those we love, its not as easy when the shoe is on the other foot.

I had started taking fludrocortisone, took it the first day and got a terrible headache. I took it for the next 2 days, and the headache remained, on what would have been day 4, I decided to stop per doctor recommendation, its been 7 days since the first dose, and I still have a migraine. I would definitely make them aware of your sensitivity, in case you have a problem.

Is it painful, or itchy? I would say it sounds like shingles, I know he is young, but it could happen. For me, I started getting shingles at 19... And now its once or twice a year, brought on by heat or stress. When I get the rash, I'm achy all over, sometimes run a fever, , and way more symptomatic as far as dysautonomia stuff. and it usually goes away in a few days. Doc always tells me it is a very atypical presentation...

I spoke with the on call doc, and was told to stop the medication. Last night I was itchy all over, no hives, but I think that maybe I was having an allergic reaction. Ugh, I hate being soo chemical sensitive... I just want to feel normal again :-(

Ok, day 3 has been unbearable, not only debilitating headache, but nausea, and I almost want to say lethargic. I feel absolutely terrible, and very weak. I have been checking bp and heart rate, my blood pressure is low, was 78/56, heart rate around 88 sitting down. , I really want to give this a chance, what do you think, should this warrant a sunday call to prescribing doc, or should I take it tomorrow and hope I can make it till Monday... Im afraid to take anything for headache like ibuprofen, and Tylenol is not even making a dent and I'm mortified of yet another trip to er.

Its been a few days, headache is still an issue. Thanks for the tip about dosage, I'll try half and see, I'm prescribed .1, so maybe its just too much, this is the first go with any type of medication, I seem to be so sensitive to any kind of pharmaceutical, but at this point I am having debilitating symptoms, so willing to try :-)

So I started florinef today, and have had a terrible headache all day. Anyone else get a headache with this, or should I chalk it up to just a bad day? I've also been more tired today than "normal" Oh, and official diagnosis of pots, not that it changes anything, but at least its a start :-)

Well its sure got me thinking, nothing else makes sense. I'm not a runner, just the occasional sprint chasing my 14 month old, and that shouldn't be enough to cause so much damage. how did you find out you had it?

Does anyone with this also have problems with tendon degeneration? Just curious if this also affects the connective tissue in tendons. I have had two tendons in my foot simply degenerate without injury, and have suspected Ehlers for some time, it runs in my family. I've always been "double jointed" and constantly pop all over, and sadly I think my son is showing signs. He can bend in ways that make me cringe... Thanks for any input :-)

Hi there, I'm kind of new to this also but I have done tons of research on the whole dysautonomia subject. When you mentioned that you were burned, it got me thinking... And it is definitely possible that it could have tweaked your nervous system. Burns are one thing that affects your nervous system in soo many ways. And I can relate to that feeling of adrenaline, it seems to always be lurking , I get startled easily, sometimes all it takes is a loud noise, or someone saying my name a certain way. I'm still in the process of getting a more specific diagnosis, all that I know for now is that my nervous system is malfunctioning. I get very dizzy upon standing, my heart rate gets really fast, bp drops, but when i sit down, the opposit happens, bp shoots up, and heart rate drops. I have temperature control issues, hands/feet get ice cold and numb, in 80 degree weather , i sweat too much at inappropriate times, and other times not at all, lotd of intestinal and bladder issues, everything is all **** up. Pots may be just one part of a bigger picture, so you should definitely bring this up to your doc, just make sure that that the whole nervous system is looked at. From my experience, unless all your symptoms are looked at as a whole, there is a tendency for docs to address each thing as a separate entity, rather than linking them with dysautonomia. Good luck, and I'm glad you found this place, I have only recently found it, and its been a great place for knowledge and support. Keep us posted

Ok, just found where the abbreviation list :-) is. Look in, the frequently asked questions post, then scroll all the way down. Hope that helps

Hi there, I'm kind of new to all of this talk also. From what I gather, pandysautonomia has allot of the same characteristics of pots and other dysautonomia diagnosis. I think the main difference though is that those with pots have extreme heart rate increases upon standing, and you will have an extreme drop in your blood pressure, sometimes to the point of asytole, as seen in your ttt. You should do a search in the forum for abbreviations,i think that should help you figure out the talk. I'm glad you decided to come back, i have found so much support here.,

The only diagnosis I have so far is dysautonomia which i know is a broad term, it is looking like pots for sure, but other body systems seem to be malfunctioning also. I am wondering how the immune system relates to this, as I have come down with a bad case of pneumonia. I know that sometimes dysautonomia occurs secondary to a weakened immune system, but can it work the other way around? I have been under major stress, trying to figure out what has been wrong with me, all my symptoms seemed to come out of nowhere after i had my soon a year ago.

I have been losing weight unintentionally, I'm wondering if this its yet another effect of nervous system malfunction... any one have input? I deffinately dont need to loose any more weight, but I do have to eat smaller meals throughout the day, because if i try to sit down and eat a normal meal, my heart rate goes wonky

I am so new to this... as all of you know, this can be such a trying time. I have to say, I am overwhelmed by the amount of support I have recieved in such a short time. My newest "symptom" now is Hope, thank you all for helping me discover this, I know there is a long road ahead, but I'm realizing that it is just that, a road, not a dead end.

Interesting, I also tested my hubby out of curiosity, his only went up 5 bpm, mine goes up 30 to 50 sometimes! And i haven't had a ttt yet, just the "poor man's" version at the er, so as of yet, not diagnosed as pots, but to me there is no doubt of it

Oh yeah, forgot one thing, I have had RSD/CRPS (resolved) in the past following 2 seperate injuries, on my left ankle, and my left elbow (years apart) resolved after series of sympathetic nerve blocks, and LOTS of pt Also, to my gp's amazement, i have had lab confirmed shingles 4 times in 4 years, 2 locations... It seems my ans has been "off" for a long time. It's amazing everything that can go out of whack with a "defective" nervous system

Thanks, I have been told about the water/salt increases, and am trying this. I guess I should invest in some gatorade, getting so sick of plain water... does anyone have experience with acupuncture? Gp wants to try this, I'm apprehensive of anything that will mess with my nerves right now.

So far, only diagnosis has been from neurologist at er as "failing ANS" Gp said I have to see specialist to get confirmed and accurate diagnosis. In the mean time, what can I do to ease symptoms? Here its what I experience orthostatic hypotension- sometimes to the point of syncope Supine hypertension Heart rate increases with minimal activity- BAD when I stand up Vagal response such as eating, going to bathroom, causes immediate svt arrythmia Bladder/bowel "issues" EXTREME fatigue, weakness, overall crappy feeling Temperature regulation issues, hands, and feet turn colors, go completely numb and cold, even in hot weather. Also cant tolerate heat Alot of headaches Not prego, but have not had a cycle for months- I do have endo, and believe its showing ugly face again. Chronic kidney stones Major back/body pain- all the time Did I forget any??

Thanks for suggesting the video, I will deffinately have him watch. As for a diagnosis, I went to my gp yesterday, and she said that a gp couldn't diagnose? So now I have to wait for a referral to neuro and cardiology, which with tricare could take a while. So that could be up to 6 weeks, and that means no help with symptoms. Maybe I should post about what I can do to ease symptoms without meds, I don't think I can function like this for that long...