jem15

Hi Brenda, Thanks for your reply. I'm interested to exchange experiences. My symptoms started at 16, and have gotten progressively worse each year, I'm now 31 and was just diagnosed! So I'm glad they caught your daughter still in the teen years and that she seems to be responding to therapy. Though I'm not well enough to work or drive anymore (but i think the cancer/chemo made it unbearable, before that, i was barely hangin on, but still able to push it, just had to keep modifying my activities and doing less/less) , I can physically walk, I just do so feeling dizzy/faint. And I just have a really low tolerance for activity, so I can't hold out for that long and I feel off balance. My lightheadedness is a constant feeling of floatey-ness and imbalance, kind of like youre on a ship, but all the time. A very uncomfortable topsy turvy type feeling, sometimes with a sort of pressure in the head. Ha, hard to describe, but that never has gone away, it's there all the time, and some days it's just even worse than others. The "dizziness" comes and goes randomly, which I describe as more of a true spinning feeling, or when I feel like I'm falling quickly, that usually last for a couple seconds, and then I feel really weird and more lightheaded after. Occasionally, I'll get stuck in that spin or fall, but that's not that often. Many things make the symptoms worse in addition to the usual POTS triggers of heat, menstruation, over activity, exercise..etc... Vestibular triggers are like elevators, sloping ground, pools, cars/buses, treadmills (when it stops a true vertigo spin will happen), swings, basically anything with movement, even turning my head back and forth makes it's worse now and i kind of feel like I'm often almost falling alot, though I usually dont', it just feels like you turned yourself upside and back again, but you might have done nothing more than turn around. Visual triggers are like anything moving on movie/tv screens, busy shopping centers where a crowd walks towards you or if there are alot of items to scan on shelves, computer scrolling, and for me, it kind of takes so much effort to focus my eyes when dizzy, it's often just keeping my eyes open to look at or read anything. Some of the lightheadedness around my eyes will get better if I close my eyes. A person with just vestibular issues, might do worse closing their eyes, with me, since both systems are messed up, sometimes it helps me, and I often would find myself closing my eyes during different tasks. As for therapy, I started with vestibular rehabilitation for about a month, but that therapist noticed I also had visual issues from doing the SOT(sensory organization test-you can google it). Did your daughter have one yet?? That's what led to all my vis/vest discoveries. I scored extremely/unusually poor, zero in both categories. The exercises the vestib. therapist did (and you want to find a "certified vestibular therapist" if you dont have one already- some people say they do it, but give wrong info, that happened to me first) ... since my symptoms were so severe, she started with alot of vision type exercises, things like.... -looking at a letter on the wall, keeping my eyes fixed on it and moving my head side to side, up/down -looking from point A to point B , with just eyes, side to side,up/down -following a pen side to side, etc, with eyes and head Sometimes, she'd have me stand between the therapy bars and walk back and forth with eyes closed, or with eyes open and shaking my head side to side, while looking at a spot, stuff like that.. If you progress well, she said they do stuff with having you bounce on therapy balls, and go on the treadmill, etc... But she never was able to do more with me since my symptoms were so severe and said she feels my vision issues were getting in the way and preventing me from progressing with the vestibular stuff, and that i should do vision therapy first. at some point i may have to go back to vestib. rehab. So then, i was referred to a Neuro-optometrist, who further diagnosed some vision issues (nothing an ophthalmologist would know about, my actual vision is fine, 20/20) the problem with people with vision/vestib dysfunction is in the way the brain processes the input from those systems, not necessarily a problem with the structures themselves. In a way, it kind of makes sense to me that if you have dysautonomia and wacky wiring, that this can also happen. it's all weird neurological stuff. Anyway, so I just went to vision therapy for a month so far, and am in the process of updating the program. So far that includes a variety of computer programs, wearing special glasses and performing tasks, different muscle exercises, etc...I saw another neuro-optometrist specializing in vis/vestib. stuff, and he feels in addition to the regular vision therapy, to also use special prism glasses, to try and help. there's also traditional vision therapy that focuses on your central system, and then stuff for the peripheral system. This dr feels that focusing on the peripheral system first is key to vestibular problems, where vision is involved. Soo.. I'm not sure if I'll respond or not, but hope I can "re-train" my brain after 15yrs of being ill. That's the theory behind both vision and vestibular therapies. To start re-training the brain to react appropriately to stuff , so that it eventually becomes unconscious, and naturally does what it's supposed to, without the symptoms... My vision therapy is being done by an occupational therapist, instead of the optometrist, just since I have both issues, it was a better fit, and the therapist I go to works with alot of vis/vestib patients... usually optometrists do vision therapy, but it's expensive, and not all of them know about vis/vestib problems. Ok, sorry if that was too long, but I wanted to share my experiences thus far in case it's helpful. I"d see if the vestib therapist, can do an SOT test if she hasnt already, and if you/they feel there may be a vision component, check the neuro-optometrist association to get referrals for drs in your area. Also, the therapy you mentioned your daughter was doing, ie the bike, pool, etc.. was that the vestib therapist's recommendation or the regular PT, I know it might be the same person.. but just curious.. they havent given me an "exercise program" yet. I've just been doing the recumbent bike on my own. as well as home strength training, different exercises with leg weights, and free weights for upper body. But I know legs/abdomen is good to focus on for POTS. I've been exercising consistently for over a year (since my chemo ended, that's what really hurt my functioning) and still see no improvement. I've even been doing worse the past couple months. the exercise doesnt seem to get easier, and i dont seem to feel better from it. But.. i keep trying... hoping one day something finally works! And one last question, has your daughter found any meds to work? I never responded well to beta blockers, right now they decided to try me on Mestinon for the POTS. I'm tolerating it, usually I don't do well with meds, but I'm on a low dosage. no worse, but no different yet... For vestibular/dizziness issues, doctors tend to like things like Valium or Ativan, some try Meclizine, but none of that has worked for me... if your daughter hasnt tried those, it's something to look into if she's stuck in dizzy spells... some patients apparently respond to them. Best of luck to you guys, and if you have any further questions, let me know, Tara

Hi, Visual-Vestibular Dysfunction has recently come up as a diagnosis of sorts, in relation to the lightheadedness/dizziness, and my doctors say it may or may not be related to the POTS. Either way, vision therapy, prism glasses, and vestibular rehabilitation seem to be the recommended therapies which may or may not work. Just curious if anyone has tried any of these therapies yet and what their experiences were? I just started so it's too soon for me to tell. And just curious how many POTS patients, are also finding this come up as a condition?

good to know, any press is encouraging! ha, I just get frustrated when they say how most teens get better, since I've been symptomatic since 16, but was just diagnosed at age 31, after getting progressively worse each year. Ha, hoping I'm a late bloomer and still "grow out of it" ;-)

Thanks everyone for your replies. And no apologies for the questions! Just as I am looking for support, I'm glad to answer others' questions if it can help in any way. I have had a long, crazy journey so far, as I'm sure many of you have too, but I have to say all the craziness has led me to learn a lot, not only medically, but also regarding advocacy, and finding other resources. So to answer some of the questions... Re: Cancer: So far, yes, I seem to be in remission right now. But I do still have night sweats consistently, which my oncologist feels can't be lymphoma related if I'm in remission, so just to ignore them. It's possible they're due to the POTS, (since I've have everything else hormonal, etc tested) but I only got them the year before the cancer, so I went about 12 years or so without them. So I'm not 100% convinced. Also, all my cancer didn't even show on my first 2 CT scans. My doctor wasnt even going to biopsy me, I had to go to other doctors cause I knew something wasnt right. I could feel the lumps so knew they were there, but the scans came out ok. The biopsy diagnosed it. Even after diagnosis, my 1st PET before chemo came out negative! Then I had them re-look and they saw only one area in my chest, out of 4 known areas. And it wasn't showing up brightly. So... I don't have a lot of faith in the scans, but still have to hope that if it seems clear, it really is. Ha, we'll see... Re: Visual-vestibular dysfunction: This is a big topic of interest to me lately. I may even post separately on it to see if anyone else has experience with it. I'd totally recommend looking into it if you have symptoms of lightheadedness and dizziness, and if you feel certain visual or vestibular tasks make you worse...or if you feel yourself wanting to close your eyes or look out of one eye alot. It's not only been very interesting to learn about, but gives a little more insight into the mechanisms behind some of your symptoms, with the hope that therapy can sort of "re-train" the brain. I like that it's a non-drug treatment to experiment with. It just can be costly depending on insurance. I initially found out about it when I asked my neurologist to prescribe vestibular rehabilitation for my lightheadedness/dizziness. (I have a constant state of lightheadedness, the dizziness(falling/spinning) is on/off. I NEVER go without symptoms. I just have days where I'm at my "usual baseline" which has worsened from year to year, and recently even month to month, or days where it's much worse. Certain things worsen it ("too much" activity, waking up early, heat, period, etc.. and sometimes it's random) You want to find some certified as a vestibular therapist. There, the test that "caught things" was something called an SOT(sensory organization test). You can google it, the company's website will come up. It showed my brain is not processing vestibular or visual info correctly. I was then referred to a Neuro-optometrist. That's who you'll definitely want to see about the vision component, a regular ophthalmologist will not be able to tell you anything, and probably not a regular optometrist, but it depends on the background. If you find the neuro optometry association online, it'll list specialists. I'm in NJ, so I dont think that helps anyone, but if youre close to there, I can give you names. I've seen two neuro-optometrists. The first picked up on visual processing problems, intermittent supression of my eyes, plus I have convergence insufficiency, which I already knew about, but that just adds to things. The 2nd one knew more bout vestibular stuff, and focuses more on using different prism glasses along with therapy. Apparently different prisms can be used to train your system and also to help take away symptoms. I just am starting this so I can't report much on the effectiveness of treatments yet. But apparently just like with POTS, the progress is variable, depending on the person. So may or may not work, but worth a shot if youre desperate like me! And at least its something to try after all these years! Ok, since this is long, I'll stop there. I think I answered most.. oh, but yes, it is hard doing it alone, but you do what you can when you have no choice. I have parents that are close, but very limited in when they can help. Friends are supportive but an hour or more away, so it's tricky. But I've somehow been making it work, had to rely on random strangers, neighbors I just met, etc.. too. Ha, and yes, SSDI is crazy! I do think we're expected to be superheros cause I held out for like 13yrs before collapsing. Ha, and I think that's pretty **** good!

Hi all, I'm new here. Just a brief synopsis.. was undiagnosed for 15yrs, other than speculated CFS, now 31, but symptoms started at 16 after a virus, next week felt faint, lightheaded, dizzy, fatigue, heat intolerance, etc... and the symptoms never left. Same symptoms got worse each year and in year 13 got really bad , and was then diagnosed with Hodgkin's lymphoma. ( I know, how cliche for bad luck in year 13) Though the cancer and chemo severely aggravated my symptoms, the doctors said I got cancer on top of things and that wasn't the cause of my symptoms. A couple months ago, vestibular therapists and neuro-optometrists noted I have visual-vestibular dysfunction, kind of means the brain is not processing info correctly from those 2 systems, which can cause/add to the lightheaded/dizziness... but then I also got the POTS diagnosis and that seems to explain a lot of my symptoms. The visual-vestib. thing may be partially related to the POTS, but it also may not, according to the doctors. Work has always been hard for me, and I've had to modify my jobs over the past years to compensate for the declines in functioning. Since the cancer/chemo, I haven't been able to work. My chemo ended over a year ago, and I'm still not functional enough to work or drive, etc. My tolerance for activity has been so low, despite my consistently pushing to increase activity levels and consistent exercise. I have to force through everything, which I've always had to do, but now, I just can't push through as well anymore, my body just can't handle it, no matter how hard I want to or try. This is not a typical reaction to my chemo. It should've been "easier" and I should be totally fine now according to my oncologist. Ha, he thinks nothing is wrong with me and doesnt believe me, but now I know it's the POTS/ visual-vestibular dysfunction, that's complicating things. Anyway, all that background to see if anyone has been in a similar situation and got cancer when they already had POTS? If so, did you experience not only the worsening in symptoms during treatment, but also afterwards and for how long? My concern is even though it would seem kind of obvious for previous conditions to get worse with chemo, it's already been over a year, and I'm concerned with how long it's taking to recover. I thought I'd at least be better than I was compared to at the time of diagnosis. I thought minus the cancer, I'd feel better than I started, even if I still have what I now know to be POTS. My condition has slowly gotten worse from year to year and I also wonder if any of you have experienced that with your POTS? I wonder if the cancer just complicated things, or sped up the decline, but I already wouldve gotten this bad at some point anyway? My huge fear was not being able to work and support myself, as I'm single, live alone and have no one else to care for me. I'm currently on my company's long term disability, and am also fighting with SSDI to secure that. It's incredibly difficult though and exhausting, also it doesnt help with health insurance since it's 29mo from SSDI approval to be eligible for Medicare. Anyway, sorry for the long post, ha I really was trying to condense things, but I'm just curious if anyone was sick for so long, and continued to worsen, if there's still a shot at getting better? Ha, right now, I still hope there is, and considering I'm finally trying treatments more tailored to specific conditions (right now Mestinon, and vision/vestibular therapy), I'm hoping I at least have a shot. But I digress, if anyone's had any similar experiences/diagnoses, I'm curious to hear your experiences. Thanks!