rspry

Ohh try not to stress too much.. i know its hard not to when all that is going on but it really will feed your pots cycle. I have a hard time with some doctors that want me to just be fixed already or something.. or get irritated when I don't tolerate medications; so i know how you feel there. I'm currently in classes, but I'm in my 3rd year of college and they are online. Some days i don't even feel well enough to do work on there. Do you mind if I ask where you live (State) and if you are on disability? If you have grades in the honors program you may be able to take college classes online and Duel enroll.

I did some research on the NET inhibitors and from what i found the Idea is sound but the medications are not there yet. Many of the medications developed to act solely on the Norepinephrine Transporter have been shelved in the second round or so of clinical testing... Many have found a high incidence of suicide in these medications. I found one drug in this class that is approved for use in the United States that may be beneficial, but i am not a doctor. There were only a few that actually made it to the market and most of them have side effects or uses that would contradict the reason why potsies would want to take it (ie. amphetamine like results)

I have been on Midodrine 5 mg twice a day for 6 years. I personally have very few side effects. I was told to wait at least a half hour before taking a nap or laying down so that's what i have done. If I would like to sleep and its time for a dose ill usually take a nap and then take the medication when i wake up. Everyone is different so I would defiantly give it a try.

Ohh compression stockings... the bane of my existence. If your having issues with the full set I would definitively try knee length like Diamondcut said. Its hard to wear them though especially in the summer.. We over heat easily and supposed to layer on some super tight socks?.. so much for flip flops. The blood flow when your wearing them is getting back to the places that are a bit deprived so i would assume its pretty normal to feel dizzy when first wearing them. Especially since it seems to happen to many of us. I think its kind of like a head rush. The stocking do help with vasoconstriction, so do muscles, so if you can work out your leg muscles it will help get the blood flow where it should be also. I am new to Hyper Pots personally but I know my doctor had other clinical signs he was looking for aside from BP. Although is your blood pressure rising when you stand as apposed to getting lower? That may be why he made his diagnosis. I'm not sure I understand your question about vasoconstricting and dilating?

Jangle I would be interested to know what medication you were referring to and i will have to look into the norepi transporter. This is all relatively new to me. I know that having high lvls can lead to associations (phobias) those need to be addressed after the nor epinephrine is stabilized. But I would compare it to facing an army as apposed to a few angry people when it comes to dealing with the phobias before and after the lvls are addressed. Sue I am by no means an expert on pheo and all of this so I welcome all the advice people have. I think it might be worth mentioning patients with POTS/ Hyper POTS etc are all a little different and many are substantially more sensitive to changes with in the body. So the general guidelines may exclude Potsies when there is indeed an issue. I think my doctor was being through before he placed the Hyper diagnosis on me and treated me as such. When I was first diagnosed with POTS I had very low blood pressure (60/40) and tachycardia while standing. It was a pretty a typical case for POTS guidelines. In the past several years my condition seems to have changed and I now have an elevation in blood pressure and tachycardia (175bpm+) on average with out my beta blocker. The anxiety also changed significantly coordinating with these other readings. While my norepi lvls are relatively low compared to standard guidelines my clinical symptoms are similar to others with the condition. So it would seem that my sensitivity to these changes warrants looking into it or at least that may be why he wants to rule it out. Kor1212... The more i talk to people the more it becomes clear to me that the Autonomic nervous system has countless jobs and any one of them can effect another function in the body. It seems potsies are as different as fingerprints and there is a number of ways in which they "dysfunction". Where i can barely stand the lvls or Norepi i have, you don't seem to be bothered at all by lvls almost triple what mine are. However I don't have any problem with swelling in my legs, blood pooling or discoloration. My resting heart rate is in the 90's surging to almost 200 while standing which may feel devastating to you and its something i manage with. See what I mean? I like to learn form everyone on here so I can feel more comfortable with what is happening in my body, and hopefully i can give some insight to some other people, but I am finding there isn't one specific fix for any given symptom simply because everyone is "dysfunctioning" differently. All we can do is try and figure out what specifically is hard for each of us and try to manage it from there.

I had a plasma test... Its a specific Orthostatic plasma test they poke you and make you wait 15 minutes while standing with the needle in and then do it again while laying down.. My lvls were 700... normal lvls are 500 or lower. I have yet to do any scans or anything to try to see if it is Pheo. For those of you who had the testing done.. medications can give false negative readings.. I had to stop taking my beta blocker before the test (really hard since I needed to stand my heart rate was out of control). Also medications that help with anxiety can mess up the results. I am talking to my doctor tomorrow about what to do next... I'll let you guys know what we find.

So I have been struggling with severely debilitating symptoms of Panic and Anxiety over the past several years. It has been worse in the past few months where I am at a point where I am scared to look out the window at times. I talked briefly about this in another post (Help with anxiety). Since I made that post my doctor had me do some testing to get the levels of adrenal chemicals. The results showed a very high amount of nor-epinephrine. High amounts of this hormone can cause just about every symptom I'm experiencing. SO that was somewhat of a relief to know at least it wasn't just something in my head that counseling and meditation could get rid of (because I have tried everything). This could lead to a Hyper Pots diagnosis however, I recently found that my doctor was concerned that I could have pheochromocytoma. Has anyone else been diagnosed with this or had testing to look into it? I'm just concerned that its been a tumor causing these symptoms for all this time and the stage it would be in at this point. Any input would help. Thanks `Rachel

I know the main topic was relating to visual disturbances your daughter is having. I have experienced the same issues causing migraines and a general crappy feeling from being so disoriented at times. From experience i have had MRI's with no results shown and saw a specialist a the large teaching hospital near me, had all kinds of visual tests done to find that my eyes were completely healthy. So before you have your daughter do some of that testing they may recommend consider first that any loss of blood flow to the brain even if shes on medications, even a 2% loss of blood flow due to orthostatic changes can lead to grumpiness, visual disturbances and other symptoms. :/ I know that's not what you wanted to hear. I have been there where i wish they would just find a tumor or something so i knew WHY... not saying you would ever want that but you know what I mean. Before her next violin lesson or practice have her drink a big glass or so of water and a salty snack. Hopefully it will help her brain get the fuel it needs to focus her eyes. Also I found the contrasting black and white in writing (and music notes) is harder for your eyes to focus on. Try printing it on another color... or white music notes on a colored background. It helps me a lot to highlight things on the computer to make them easier to focus on. If something is hard for her adapt to a way to make it easier and she'll be able to keep doing the things she loves. Let me know if you find anything else.

Our bodies have limits, not unlike those who train for triathlons or a boxing match and push to the point of throwing up. We just have a different threshold for it and while its annoying that doing every day tasks exerts the same kind of energy as someone in vigorous training, I don't think the response to the exertion is unnatural. Try to listen to your body and stop when you feel like your at that breaking point or before you get to it.. In the event you have something to do that you cant help but keep pushing through (like moving) take frequent breaks and loads of water to try to keep up with whats happening around you. If its a problem your still having with out the over exertion you may want to talk to your doctor about it and see if there is something else going on.

I really appreciate all the feedback... Makes me feel less like a crazy person. I'm hoping that if I find the right medication it will make this cycle stop. When you have spent so much time over thinking and worrying about things its almost hard to imagine a little magic pill that can turn it off. How soon after starting to take the medications did you feel better? Also when I was looking into the medications I was looking into what they actually did.. Like Clonadine HCl was used to basically open up the a1 channels in the synaptic cleft to allow absorption of the norepinephrine, so it doesn't spill over into the blood stream causing that paranoid creepy feeling. I believe Benzo's affect the GABA receptor which open up all of the channels which effectively does the same thing. My sister is in med school and she came over and drew me diagrams of the neurotransmitters and the re-uptake process etc. From what we found there is one of 3 problems or a combination in HyperPOTS. Too much norepi is being sent out so the excess is getting spilled over into the blood stream, the proper amount is getting sent out but the channels (doors) are closed so they cant get in and spill over, or after the message is sent through the door the axon doesn't re-uptake or recycle what didn't get used so it spills over.. Still looking into other medications and their roles in this process.

I do use breathing techniques and try to use other means to help me relax. I have been managing with just that for years but lately it seems more and more out of my control. When I seem to overcome things that I thought of as triggers, a new strange one emerges and I am terrified of something ridiculous. I have always found comfort in knowing I could go to the hospital if I got sick or dehydrated or just plain didnt know what was going on. Lately though the thought of it freaks me out. I feel like this is some cruel joke. Things I found comfort in suddenly upset me.

Hey everyone I'm a new member here and wanted to get some advice, I have been diagnosed with POTS since 2005. I was 19 and living on my own when I first started to see symptoms; Very scary being by yourself and not knowing what was going on. I had to quit working and leave school because started having severe symptoms pretty quickly. They seemed to come out of nowhere. I had a very difficult family life, so after I became ill I stayed with various friends that were willing to help. It’s one thing to be sick with a chronic illness that no one seems to know about, it’s another to not have the comfort of your own home to be sick in. Luck for me, I have really great friends and friendships I still maintain from when I was younger. I had many hospital visits and MANY times I was told that I was having Panic Attacks and was prescribed Zanax, Zoloft and Paxil (not all together) given sedatives and big doses of Benadryl to solve my problems. Once a doctor asked if I wasn't eating on purpose, as in did I have an eating disorder… That day took the wind out of my sails completely. It took doctors 2 years between a dozen or so different specialists to figure out what was going on. A diagnosis only came because I happened upon POTS while researching myself and found a doctor that was familiar with it. I tried many medications before I found some that seemed to work. I am currently on Propranolol 20mg 3 times a day and Midodrine 5mg 3 times a day. I don’t seem to have many side effects from these medications, however with the Midodrine you need to wait 30 minutes before you can nap after taking it so your blood pressure doesn’t spike. I have been putting along for several years now with just those medications to manage my ability to be upright. Don’t get me wrong I appreciate not fainting anymore, but there are other aspects to this illness that my doctors don’t seem to be addressing. I have the hardest time with the “anxiety”. It completely debilitates me. I have read forums and hear people talking about it but it doesn't seem to affect people to the extent that it affects me. I was writing to hopefully get some feedback. Maybe it’s just not something you all have talked about in depth, maybe it gets swept under the rug as another annoying symptom. I feel as though that part of it is forming a life of its own. I don’t like to be alone (because of episodes of fainting and such that have happened in the past) I don’t like to drive alone (because of other bad experiences), I get anxious now about taking new medications because if doctors don’t know really what’s going on in my body how can I trust them to know what it will do to me? There are so many other things and at times I just want to lock myself away somewhere. I have recently begun to battle my doctor about the Hyperadregenic aspect of POTS as well as MCA (mast cell activation) because I feel completely out of control of this anxiety and he seems to think i am just unwilling to come to grips with having a panic disorder in addition to POTS. I have panic attacks watching TV and going to the grocery store and at other times those things don’t bother me at all. It’s hard because your mind marks down the events that resulted in you panicking and will do whatever it can to make you avoid it from happening again. But if there is no rhyme or reason to it other than an overproduction and underutilization of the ‘Flight or fight” chemicals you end up confused and subconsciously scared of things that really didn’t trigger anything. My doctor said he was looking into blood work to diagnose Hyper POTS and some testing to check for MCA but he sure is taking is sweet time with all of it. Anyone have issues with this at all? Any specific medications help. Iv'e looked into Clonadine HCl but I'm really not sure about any of this. The anti-anxiety and antidepressant medications I have taken in the past have made my symptoms worse. I could really use some support, any words of advice or even similar experiences would mean the world to me right now. Thanks ~Rachel