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Hey Rah, have you tried using compression stockings to see if they are helpful for you at all? Also is your daily walking to classes and physical exertions more than what you were used to back at home? I think the most important thing is that you need to listen to your body, because at least in my case, pushing through just made things much worse; only you know what your body can handle.

Hey lewis, I think overall depersonalization disorder seems to be pretty impervious to most medications, at least when studying one medication trial across a group of individuals. I know lomotrigine and ssris have been studied for this, and Dr. Abraham who sees patients with the drug induced form of depersonalization disorder (he refers to it as HPPD) has his own medication trails going, which I can't remember exactly but I think he tries patients on sinemet and an antisiezure medication, and then there is a psychiatrist in New York, blanking out on her name as well, who from other patients online I read prescribes a tricyclic antidepressant, again cannot remember the name of it but it is not amitriptyline or nortriptyline. Most of those doctors are sited on many of the depersonalization disorder scholarly articles. For me amitriptyline has been immensely helpful, but I've also read about other patients who it made them much worse, I think it's a bit like POTS in that each person responds very differently to each medication.

Hi Mike, I have depersonalization disorder. For me the depersonalization and derealization were my two worst symptoms when I first got sick, the POTS symptoms were not real even a problem at that time. My first 4-5 months of being sick the depersonalization was awefull, but the derealization has typically been more of a symptom over the years. One of my medications helps both of them thankfully, but yea it's one of the worst experiences I've ever felt; tons of brainfog, feeling so detached, and everything looking very daydream or picture like, and just feeling detached from my emotions even though they were still there, it's definately a strange form of suffering for sure.

I think all the tests she does that first day are pretty extensive in and of themselves, if the results show any abnormalities I'm sure there will be more investigation; I know in my case I had to do a week long blood sugar testing to see if there were any correlation with my symptoms.

Hey Robin, my experience with doctor Gilden was pretty good, it just got to a point where she wasn't really able to help me with my symptoms, though prior to my major POTS stuff I already had 4 years of dealing with migraine and depersonalization disorder, and random symptoms that weren't characterized by either, so in my case I felt I really needed a neurologist since that tends to be where all my symptoms stem from (I haven't yet found a doctor who has been able to really help me in a significant way). What I liked was how thorough Dr. Gilden was though, the whole first appointment is a day long like literally 7am - 7pm for me, lots of blood tests, ekg laying and standing, and then she kind of inventories your symptoms. It was the best experience I had outside of Mayo Clinic as far as thoroughness, so I felt it was worth it even to just rule other things out.

Hi Robin welcome to the forum I am from the Chicago area as well; there are a few doctors I've been to who are pretty knowledgable about POTS, there is Dr. Barboi who used to be at Rush but I believe he is now at Northwest Community or something like that, he is a neurologist. Then there is Dr. Janice Gilden she is an internal medicince doctor but has seen many POTS patients; the first day visit with her is a long one fill with many tests. In my personal experience she was more thorough than Barboi, but there are others on the forum who received help from each of them. Here is a link to the physicians list which you can look up doctors by state: http://www.dinet.org/index.php/physician-list

Hi katyroq, and welcome. I do find that stress tends to make my symptoms worse, especially with anxiety making me tachycardic. If I push myself over a period of days it will get to a point where my body begins to let me know that I need to ease things up, I've had to adopt more of a balanced approach to life even though its not exactly what I would like. Pushing through for me is typically very difficult because it is a double edged sword, sometimes it's okay, other times I'm asking for trouble.

I think unfortunately POTS is not well known or understood in the general health community so it is often shrugged off an an anxiety disorder or something else. I was as Mayo Clinic because everytime I did any exercise I would be bed bound for a week feeling awful and the doctor said I only had minor POTS and my symptoms were just an anxiety disorder, and my being irritated with her inability to actually listen was just more proof of it. Went back to Mayo later did a TTT and saw an autonomic specialist and was diagnosed with POTS no problem. You really do have to find the right doctors who understand this illness, but it is much easier said than done.

First off not all doctors are created equally, and many doctors who aren't specialists in this area or who haven't run into many cases of POTS aren't typically as knowledgable about the disorder so it would be good to find a specialist if you can. I believe the criteria is a +35 increase in hr from sitting/ lying to standing. Have you had a tilt table test done? My hr doesn't always have the +35 jump, but it has shown both times on the tilt table which is a pretty controlled setting. Also not everyone with dysautonomia/ POTS has the same symptoms; I have never passed out and my hr and bp don't have massive swings compared to some people but most of the time my vitals don't really correlate with my symptoms or how I am feeling, though I can usually tell when my hr is running high.

I think the aim is really to try and retrain your heart to work properly (or at least something along those lines) so I would assume the if you can do 30 minutes of cardio why not increase it to 40 minutes? And with leg weights I would also think it would be better to focus on endurance, so lower weight with more reps, rather than more weight with less reps. I am nowhere near that point so maybe other members can share their experience.

My eyes take longer to adjust from light to dark, like when driving at night. Usually when I start pushing my body my vision is the first thing that changes usually things start looking "hazy" and it gets to be more difficult to focus on any one thing.

I too have had fatigue that seems to come on out of the blue, typically it will come one day and last for a few days before I feel more "normal" again. For me it hasn't lasted as a daily problem, but I will have days here and there where I carry around the feeling of being exhausted from the moment I get up to when I go to sleep at night. Again it seems to happen randomly and runs its course over a few days before dissipating.

I do CBT, for me it was mainly to treat my anxiety disorder and depression. I see my anxiety is very much influenced by how sensitive my nervous system, or POTS symptoms seem to be on any given day. I do find it helpful to a certain degree; it has helped my OCD basically become a non-factor, and with practicing mindfulness, my anxiety and depression have gotten much better. I think CBT is a good start (assuming the costs aren't a problem, because it can get expensive), but for me I had to do more outside of the sessions, so doing daily meditation and reading from a mindfulness book to help put it into practice on a daily basis.

Yes, every day is more or less the same but different.

I am currently on amitriptyline which is pretty similar, just an older version, but I did try nortriptyline at one point for migraines. On nortriptyline it seemed to cause me some chest pressure (this was before doctors knew about my POTS), but I think it was from upping the dose too quickly.

Yea I have one area on the top of my head that is very sensitive, even a little bit of pressure and I just feel "off" throughout the rest of the day, haven't yet gotten an explanation for it. Is your always the same area and sensitivity? or does it change from day to day? Mine is always the same.

I've had this since my POTs symptoms got worse, but there is one are of my head that is very very sensitive to any physical pressure of any kind; if I touch that area of my head and put pressure on it, it is almost like I feel like there is an air bubble there for the rest of the day and I just feel "off". Anyone else have anything like this? Thanks.

Have you tried using compression stockings at all to see if there's any symptom improvement?

Yes, overdoing it one day definitely takes a number of days for me to feel somewhat "normal" again.

It may be good to get the TTT done just to have it, and have a more definitive diagnosis. Last year I had to do a treadmill test which was causing me much more fear than the TTT, but I just told myself I basically had to do it if I wanted to have a better chance of getting better, or helping my doctors understand what's really the problem with me. Its kind of the pain now = better days in the future kind of thinking. What symptoms are you dealing with that are most distressing? and how does the beta blocker affect them?

Hi rje11, I think you would probably need your doctor to explain the results to you in detail to get a full picture of what they think is going on, though I would assume that your tests show different abnormalities in your autonomic functioning. Once again though, I think it is best to try and call your doctor and see what conclusions they may have come up with.

I have not had a lumbar puncture, but know the headache is a common symptom. I was just wondering how is your derealization doing? That's been one of my long term symptoms, far before my POTS stuff got worse.

Hey everyone, just today tried to test the limits of my body by doing some laying down peddling in the air with leg weights on for a few minutes, to see if I could find a physical exercise that I can actually start to do on a regular basis and build on. I noticed this is less hard on my brain and body than trying to walk or jog, but I was wondering how does everyone's head feel after they exercise? I don't feel bad, but I also don't feel great, like part of my brain liked the extra bloodflow, and the other half didn't. Feeling a little full-headed, and some brain fog. No headache, just feels like my head is a fishbowl if that makes sense.

It may be good to seek out an autonomic specialist who may have more experience with cases similar to your son's. Does he wear compression stockings at all? They may not solve the problem of passing out but it might be worth a try to see if they are helpful.

"Fuzzy" is a good way to put it, I always describe it to my doctors as "hazy" but its definitely different than blurry vision, almost like I'm trying to see through invisible fog.