robert elrod

I go through bouts of insomnia and hypersomnia,I found adderall to be the only way I can get out of bed, I take it then approx an hour to a hour and a half I can get out of bed and make it to the couch. I know a lot of it has to donwith the oain and not but if I dont get my morning dose of meds I won't make it out of bed until after 2. There are still periods where I sleep 20 hrs a day and periods I go days without sleep. The adderall helps but definitely hasn't fixed it.

Robert - My odd presentations. Well, I guess I am looking more like hyper pots. But I am having so many problems with my left side. Except for blood pressure and pressure/tightness below the sternum, all of my symptoms are on left side. Left side of face, on the left side of the spine on my head, neck and middle back. Left arm, sometimes (and currently) left sided pain either right below rib or right above hip, and sometimes left leg around knee.

I am usual as that my problems are worse in morning, but hot showers usually make me feel better. Bending, stairs, exertion of any kind, sometime just certain positions make it worse. I do not get out of breath when I do stairs, but the above symptoms happen sometimes it will start immediately, sometimes an hour or so later. But bp goes up and I start sweating and get all the pain and tightness mentioned. The stairs cause extreme symptoms that can last weeks or end up in ER. I felt like I was learning my triggers but this recent one I can't figure out.

It seems like my blood pressure is more of a problem than my heart rate. My heart rate will jump and it did on the tilt table, but even on that they said it was irregular. One doctor felt it indicated POTS another thought it indicated something was wrong but wasn't quite sure what, just that it was irregular. I guess because it was going up and down, but mostly up. I am beginning to think that the bp meds that I am on may not be working so well and may be causing some of the problems now. Now I had these problems before going on them, but now it seems like the symptoms are occurring worse an hour or so after I take one of them and lasting forl any where for 4 to 6 hours. Of course, the doctors want me to stay on that one and stop the one I think is helping me! Unless I am bed bound, I usually feel a little better if I am able to walk a little bit, I know for others laying down helps, but I don't do that often because it usually will make it so much worse when I have to get up.

Some doctors felt that my main problem was my neck, and I do agree there is something going on there, but I don't think that could cause all the bp and digestion issues also. They are doing an MRI and MRA soon, to see if there any blood vessels messed up in there.

I sometimes think there is something wrong that they are missing and that maybe they need to do angiogram. I am on a waiting list for Dr. Grubb's assistant but there is over a 8 month wait. Sorry this is so rambling, I am really feeling awful since the Cleveland visit, last week I ended up in ER for the first time in a year and today is just as bad, plus I am dealing with a crying teenager who thinks her life is over and my illness is adding to her terrible life! Lol.

Sorry so late, have had a rough 5 days.

It sounds a lot like what I went through. It is hard, but do Google scholars search and print what you find. A lot of my pain they say is from fibro. Have you read any into fribro.

I am so sorry to hear that robert, and I totally understand. I am struggling right now with some odd flare and new unusual symptoms and have no doctor to really discuss this with. My primary has stated she does not know what to do. The specialists I am seeing at Cleveland, have not yet found anything, and doctors do not seem to agree with each other. All say I am not a usual presentation, lucky me.

I hope you find some help soon and that the rest of us do too.

I hope you get some help soon. I have had the worst luck. My gp actually fired me last week when I finally came back from Vanderbilt saying I was too complicated and time consuming and I needed to find another doctor. To add insult to injury he had to add he doesn't believe I had anything but anxiety and only women get fibromyalgia and I wasn't flexible enough to have EDS3 . All of my diagnosis came from specialists he sent me to, but he still disagreed. I should have stopped seeing him a long time ago.

Btw how are you presenting that is such a challenge.

I hate it , just got back from new doctor today and they act like they have no idea what I've been diagnosed with. Still no treatment and get another appointment a month away. I cant belive this is such a mysterious affliction.

I experienced with the surge of adrenaline sore cramping leg muscle and just overall felt worse. The stress of the rude customers combined with holding your tounge is a bound to lead to a release of adrenaline. The longer I subjected my self to the abuse the worse it got. This is any stressful and loud situation. As well as I know they say fibro/Dysautonomia isn't progressive my has since it first started bit maybe it will settle down. Rest relax and next rude customer you get make up some lame reason you need to get them talk to the person over you and wash your hands of them.

Before starting any medication my hands were turning blue so cold. Ended put getting a ct scan looking for a magical extra rib because my doctor said he couldn't get a pulse down at my wrist when he had me raise my arm. Still get cold hands and felt but has gotten better with some of medicine. There wasn't a third rib or anything. It was one of those preliminary shot in the dark my doctor looked for.

What is your dx or suspected dx.

yes, depersonalization is what it feels like. feels like i m not getting enough oxygen to my brain. i m not going to be able to work because of it. i applied for ssi may 2012. how do i explain this symptoms as 1 of the reasons i will not be able to work? i just say i feel funny, but i am sure there is better wording.

I'm not sure if were talking about the same feeling. The best way I can explain how it feels to me is that my entire body experiences time passing slower than my mind is. I have an over whelming pressure in my head and my hearing is either dulled or ringing. Kinda like moving in slow motion, I turn my head fast but has a deleyed time to visualize the changes. Like I have limited control over it and at any time I am not going to be able to keep my balance. Really bad when making quick position changes from squating or sitting ti standing. Hate to use a video game analogy but when you hit too many buttons an th character slows down but still does what you want. I joke that I'm going thru a break in the space time continum and it take a moment to catch back up ..lol As far as SSI refer to it as sever autonomic dysfuntion presenting by limiting your coordination and balance among other symptoms .

I voted that I figured this out. But really, it was a combination. I spent about nine months, with doctors telling me I had a disease, anxiety, that I needed to treat that and I would be better, then they added I had a eating disorder. Even though, I told them I couldn't eat anything because I was so sick. I was told, GERD, anxiety and eating disorder. But, I got so bad I ended up being admitted for 4 days to a hospital, only because one cardiologist listened to me. I told them it changed from lying, sitting and standing. She actually took my bp this way for hours and then admitted me. The most validating thing was when she told me, "No, anxiety could not cause this. The FBI/CIA would want you if you could make your body do this" But she also, said it was beyond her realm.

So got me on some bp meds and started the tests for pheo and sent me to an endocrinologist. Told me I would continue to have flares until this was figured out.

I had made an appointment with a psychiatrist during this time, because another docter felt it was anxiety, and like another poster on here, I thought if that was what was causing it, then fine, just fix me. On the second visit to him, I told him about the hospital stay and he told me you have dysautonomia and he wrote it down and said give this to your doctor. Oh and you don't need to see me anymore.

Those two doctors helped me on my way. The bad part is I still don't really have a doctor that treats me. I have met one cardiologist that did the ttt, and felt it indicated some form of POTS. But she also seems to only know what to do if you are a low bp POTS, and I am have high bp. I have just recently come back from Cleveland Clinic, but so far, nothing, I am not presenting like typical POTS. So I am just struggling every day. My CC tests seemed to trigger something and I am in a middle of flare that is worse than any in almost a year. I wouldn't mind so much, if they had provided answers I am just hopeful that CC doctors will continue to search with me.

It is difficult not to have answers, even worse when you know and can't get doctors to listen. My diagnosis of HYPERANDRENIC POTS came from the increased heart rate and blood pressure upon upright and exaggerated with exertion. There's a way to also check the levels of response of you autonomic nervous system while in the the positions of laying down,sitting up and standing. Since they left me hooked up to the ekg and the monitors showed dramatic increase she didn't feel like it was necessary to also check the blood work. I can go from 75bpm sitting to 130+bpm just standing even on several beta and alpha blockers. This happens very quickly, no need to wait minutes. Needles to say I am still being experimented on to see what will help.

I agree. One why we are treated so bad and second why do so many of us have to diagnose ourself then fight to be believed again.

I know exactly where you're coming from, Robert. I've had periods where I've felt completely mind-mashed from self doubt. Is it something I'm inadvertently doing to myself? IS it all in my head and I somehow make the faints happen, or let them happen? It's a horrible, horrible place to be, and I found myself swinging from complete self doubt, to outraged chip on my shoulder for not being believed. Having a diagnosis doesn't make the illness go away, but suddenly I can put all of that mind chaos behind me and begin to understand what's happening to my body.

I was trusting the old anxiety dx without a know as the old doctor put it. I was told if I just believe him it would all go away. I guess part of me was hoping he was right. I was so convinced I started asking that he commit me because I was getting worse.

https://sphotos-a.xx.fbcdn.net/hphotos-prn1/74753_306330309481579_12591441_n.jpg

Above is one of the sheets from the test, its 272 but it hit 275 .

Mine was during a stress test. It was the same feeling I got whenever I exert myself. I did get a heart cath. Everything wss normal untill he administered the drug then my heart rate went super tachy. I dont exercise and the exact reason was never given but got the diagnosis of hyperadreneric pots.

It was the extended release. This was before I knew what was wrong I might have overcome the initial effects if I kept with it. I just didn't like the way I felt with it. But every body is different. It may help. I am still trying to find something that helps. I've even taken as much as 200mg of metroprolal and still have bad svt. I still hope that the next combination of medicine will be the one that helps. I figure none of it will kill me so why not try whatever the doc gives me. I guess its just the desperation but so tired of hurting. Would give anything to have a break from this.

I was unfocused and distractions would keep me up late at night. For the short time I had it I can't say for sure it got my heart rate up but as I remember it felt like my chest was going to explode .

I would say very fortunate that you didn't have to endure the long road to diagnosis.

The whole process took about a year from the er visit, to a actual dx and treatment. I wish I would have been a little more aggressive since I settled for way to many "increase water and salt" before I decided to try medication. I guess my experience is a bit different in that I have had issues/disability since childhood, and things were very gradual over the years. It was easy to ignore worsening symptoms, and it wasn't till I was fainting multiple times a day that I decided to seek help.

Looking back I can see how it was slowly affecting me for years. Although I always was told I was fine I gave up seeking help. I fought hard until about 3 years ago when the visual symptoms began and i couldn't work through not seeing clear. But was told everything from I was drinking too much caffeine to conversin disorders. Which I started hoping and believed it was. The pain started to worsen and the symptoms began developing faster. That was hard believeing I was causing it and I couldn't fix it. But by no means do I discount the difficulty of living with this no matter how fast or slow the name comes for what it is that is affecting you. This not only affect every aspect of your life your family and friends are affected as well. I never want to minimize what any of us go through, too many others I encounter do that enough .

I would say very fortunate that you didn't have to endure the long road to diagnosis. I mean that in a good way. I actually believed for a while that everything I was experiencing was self induced by some subconscious action that I had no control over. That is in and of itself is the worst place to find yourself.

I was given this before I was even aware of my symptoms. It had a real bouncing off the wall effect for me. I will say however that any of the ssri's and snri's can affect normal people differently and for all of us with autonomic disruption the effects can really vary, not just person to person but something I've experienced day to day as my symptoms vary wildly. With good advice from your doctor and trial and error and tracking hopefully we find something that helps. As cymbalta helps a lot of fibro patients I had an adverse reaction within two weeks of starting. It is always good to suggest to your doctor any medicines that might help and remind them there is no defined course of treatment its all supportive and if a medicine doesn't help you assert yourself and demand a change. I have talked to so many people that just takes the medicine without any effective change to their symptom. Good luck and I hope this helps you.

A lot of times just calling the court clerk and explaining you situation they will allow you to be excused. If not then ask if they are willing to make the necessary accommodation for you disability and what you would need concerning breaks and etc. You will find they will excuse you quickly without the need of a doctor's note.

I found this poll interesting. I've just been diagnosed with POTS after almost 20 years of illness. It seemed that everytime I was sent to a different specialist, if it turned out that whatever was wrong with me, wasn't their specialism, then they would send me back to my doctor with a diagnosis of anxiety. I do have anxiety, but as a result of the illness, not the cause of it. What astounds me the most is that no one ever offered me treatment for anxiety, and also that none of the people diagnosing me, had any qualifications in mental health. I wish they realised how hard it then makes your future road, as every time that diagnosis comes up again, the next doctor takes you less seriously in finding out what's really going on.

I finally had a breakthrough after another batch of blood tests suggested Addison's Disease, but when further tests proved negative, I was pointed in the direction of possible POTS, and finally to a specialist that knew what they were talking about. At last!

One of the most disturbing occasions on the road to diagnosis, was seeing a new doctor, who told me that I'd been abused as a child. Horrified, I told him that he was completely wrong and that I had a very happy childhood. His response to this was that the abuse was so painful that I've blocked the memory out, which has caused me to keep fainting. I really wish I'd reported him now, but at the time I was so upset I just withdrew from medical professionals as a whole.

Such a similar thing for me. While suspecting gallblader problem, I got to the point of saying if this is just all in my head just commit me because I can take it anymore. His response of it can't all be in your head some of your blood work came back with high readings. That's is what led me to Google my symptoms and to suspect Dysautonomia HYPERANDRENIC pots and EDS3

I just think back to all the times I kept getting told to exercise and trying to explain how I felt.

I often think if just one doctor would have checked vitals while standing how quickly it would have pointed them in the right direction.

I have had this so long that my high heart rate felt normal, even the 275bpm felt like anyother time I was active. I was acustom to it so I never complain about it as a symptom I alway thought that is how everybody feels.

I haven't started exercising. I have an extremely hard time getting up the energy to leave the house. A walk to the mailbox gets it to 140bpm, a shower and getting dressed hits 160bpm and during my stress test 3 min in and I hit 275bpm during first incline. I keep hear people refer to flare. I guess I understand a little that its when the symptoms are worse. I feel like since 2011 mine has been slowly getting worse with no real time of complete relie. My question is do you ever feel symptom free or just that the symptoms intensify during flare. Im new to my diagnosis as of this month.

During my journey there was so much that was dismissed as anxiety and depression. Every doctors visit was dreaded because I just knew that it was all in my head. Thats what I was told for the longest. The symptom that finally broke through the wall of disbelief was my heart rate. I had seen a video describing the poormans tilt table test. When I did it I was shocked. That was the turning point in my diagnosis path. The nail in the coffin was my stress test. During the first incline my heart jumped to 275bpm with a 200/110. Never the less still took trips to specialists in dysautonomia to get the final diagnosis. The question I have is if you experienced the hasty dismissal yourself and what was the turning point for you. My hope is to help others that stumble upon this forum and post that it is a long road to dx and what helpeped in uncovering your diagnosis and maybe just maybe it will shorten someone else time. The second worst part for me was the disbelief and so many test that came back negative.

Im new and board an suffering from insomnia reading old funny posts but I have to ad my 2cents here. Hope yall dont mind.

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When your on a first date you expect a little craziness but when you see your new doctor you always sound crazy,!

Wished my doctors would have seen something like this many years ago. No telling how much suffering he could have saved all of us.

Not really a missed symptom but how many are hyperpots. And if they have another condition like eds or fibromyalgia etc. But real good list. First time I actually saw all my symptoms grouped in on large list. Kinda surprising to go down the list checking off so many.