delphicdragon

Sorry to hear you're doing poorly. I find that the less medication I take, the better. I also have found that not putting stress on my body is the best thing I can do. If I am feeling icky, I sleep in a little later and go into work later - if at all. I am lucky to have a VERY flexible job where I can "usually" work from home. I take Sudafed around the time of my period and eat WAY TOO MUCH salt for my own good. If I start to feel shaky, I go home and lie down. (I live across the street from my job) As long as I don't let myself get too POTSy I can usually function. (Didn't stop me from ending up in the hospital in January though.) Have you thought about stopping the meds for a month (under drs care of course) and then starting them up again? Maybe your body needs a break I can only imagine your frustration with Ohio. Best of luck to you. Sara

Well I got the results of my MRIs from the car accident. Cord seems ok, except for the herniated disc I knew about. But, I was diagnosed with Epidural Lipomatosis. (Basically fat deposits around the spinal cord) This disease occurs in men who are obese and on corticosteroid therapy. I am neither male, nor obese, nor on steroids. Anyone heard of this before, or is this just another rare disease to add to my repertoire? Sara

Ibuprofen seems to decrease my POTS symptoms, if it does anything. Could you be having an allergic reaction? Sara

Julie- We're in CT. Are you talking about Brigham's and Women's in BOSTON?? That's about 2 hours from me. Once his exams are over, the plan is to try the ranitidine (Zantac) for a few weeks and see if that helps. I'm certainly hoping it does. My worry is that the dr will say "see it's indigestion" and not look any further. Sara

Thanks for your insight Flop. He can't balance. I know after the wisdom teeth thing he did pass out (thankfully his dad caught him) and he describes these instances as similar to that. I'm not really sure, but I'm going to ask him as soon as I see him (Finals week for both of us, so we're a bit swamped.) Sara

Hey Everyone- Not sure where this should go, but, here's the story. (And yes, I know no one here is a doctor (except doctorguest), but considering all our medical problems, I think we should all have honorary medical degrees) I've been dating a sweetie for about 6 months. He "gets" how I'm feeling and has been more than receptive in understanding my limitations (perhaps knowing me for 6 years might be part of it) Anyway, he had major oral surgery in January (wisdom teeth out AND a bone graft) and ever since then he gets really dizzy standing up. I've checked his heart rate on these occasions and there is no change that I can feel, but if he starts to walk, he falls over. This started happening right after the surgery and hasn't gone away. He went to the doctor, and explained about this as well as some disturbing digestive symptoms and she basically said, "oh, that's normal". Riiiight. His digestive stuff sounds A LOT like gastroparesis, but I'm not sure. He's wicked thin (6'1 and 135), and has had issues for about two years. He says he gets full really quickly and then it feels like there is a ball in his stomach that doesn't go away. (Kinda gross, but I asked if vomiting relieves it - he said yes, but if he relied on this he'd be doing it every day ) This fullness happens even with drinking water! He then gets severe stomach and chest pain (generally right sided), so bad that he can't move, which seems to resolve in about an hour. (Scared the **** out of me the first time that happened ). He winds up really pale when these events occur. Heart rate seems normal - albeit slowish during these instances. His stomach seems always upset and as he puts it "nothing stays in him" and he describes having to trick his body into eating by downing a Slim-Fast or Boost or something before his stomach can figure out what he has done. He mentioned this to the doctor and she said that "it's acid reflux." Going on that premise, I have treated these episodes with Tums and Papaya (natural enzyme good for indigestion). Neither caused a reduction in the intensity or length of these episodes even after multiple attempts. The doctor tried him on Prilosec, which caused arguably one of the most severe allergic reactions I have ever seen short of anaphylaxis. Severe hives, bruising, insufferable itching, and cold chills for almost two days ON Benadryl. Now she wants to try him on Pepcid for a month to see what happens. I know it's not the same thing, but he's panicked about taking it and I don't blame him. There's also the worry that if it doesn't work, she's going to just keep him on it indefinitely and not search for some solution. She did run some blood work for H. Pylori (negative) and for lactose intolerance (negative). One other weird thing is that I can write on him, and I don't mean with a pen. If I touch him I can draw on him (played tic tac toe on his stomach the other day (yes, I know I'm weird)). I read that this is called dermatographia and it tends to mean a high allergic potential. He also has severe migraines, triggered generally by sunlight. I look at him and think that he's only 20 and shouldn't be having these medical problems. Do these symptoms sound familiar to anyone? The OI and stomach stuff are really bothering me, and him, but I'm not sure how much to push. He's dealing with it okay, but the stomach issues are really affecting his life (I never thought that I would be eating MORE than he does). Any ideas as to what I can do or what this might be? I thought of Mast Cell Activation Disorder or some other weird thing to try to explain it all, but I'm not sure. It doesn't sound like POTS. Should I see if he can see his neurologist soon to discuss this? Sara PS- Thanks for letting me vent, and I apologize for the length.

That's one of the more confounding things with me. The doctors don't seem to get that a high BP can be just as bad, if not worse, than a low one. When I feel really shaky and cold my BP is usually wicked high (160/100) but generally it's much lower (90/50 or less). Doctors tend not to look at the BP though because the tachycardia is SO dramatic (pulse from 80 to 130+ on standing). I don't dare take a medication for the high BP as God only knows what that would do to me. One thing I find that helps though in those instances is a little red wine and laying down. That usually drops my BP back within "normal" range. A tilt table should ALWAYS be longer than three minutes. Perhaps explaining what you are feeling to the doctor might help. I've found that saying to him I have chest pain generally gets him to pay attention instead of just telling him that I feel bad. Good luck to you. Sara

I get that if I'm up for too long. It's my indicator that I need to be sitting/lying down now! I find that lying down for a while gets the pain to go away, but I have to be careful for the next few days to make sure I don't get it back. I've been told the pain is due to my brain needing blood and "stealing" the blood from the muscles in the back of your neck. Sara

Sending you prayers your way. Best of luck to him! Sara

Well everyone- thank you so much for all your prayers. Keep them coming this way. Dad had his surgery and is home now. He's doing ok (fingers crossed). The mass was, however, pancreatic cancer. The type he has is apparently very invasive, BUT, and here's the big but, between the CT scan in mid-March and the surgery, the mass SHRUNK! This apparently never happens, but according to the surgeon the cancer started regressing. It went from 2.5cmX3.5cmX4.3cm (aka huge) to 2.5cm X1.7cmX1.7cm. (Yeah for the AWESOME POWER OF PRAYER) Also, it appears to have started out invasive and then "got confused" along the way. All margins and lymph nodes are negative. Nobody has any idea about prognosis because this "never happens", well it did. Keep the prayers and well wishes coming this way! I can't thank everyone enough for the support. Sara

Don't know much about Ritalin, but it was suggested to me as was Sudafed (Pseudoephidrine, aka, the real stuff). Sudafed is a god-send for the POTS. If you're a little leary about Ritalin, try Sudafed first. Has a similar stimulant effect but not to the same extent and is over the counter. Only side-effect I've found is a dry nose. Best of luck to you. Sara

Hi Everyone- Wondering if something like this has happened to anyone here before, and also looking for input on whether I should find myself a cardiologist or mention this to an endocrinologist or not. Recently I started Physical Therapy to help me recover from the nerve damage I sustained in my last car accident. They put me on a reclining bike and told me to pedal for 10 minutes. There was a heart rate monitor attached to the bike, so I was paying attention to my heart rate while I was biking. Normally I run quite tachy (100ish), and that was what it was initially when I started biking. As I biked my heart rate went up and then precipitously dropped to 58! It's not that low when I'm sleeping! Slowly as I kept biking the heart rate crept up to 100, then 150 and stayed there. This is a 100bpm jump in just over 3 minutes. This has happened therapy sessions in a row. Has anyone had this happen before? Should I mention this to someone? Thanks. Sara

Yep, had one. Other then it being a pain in the butt, there was really no problem with it. (I went shopping with it on- I have long hair so it covered the electrodes- and they thought I was a secret shopper, videotaping things.) I did have a little trouble sleeping with it because I toss and turn in my sleep and got caught up in the wires. All in all, I think, this should be an easy test for you. Good luck. Sara

Hi Everyone- I know this isn't about Dysautonomia but by accident my father was found to have a pancreatic mass. (He had virtually no symptoms, just some nagging chest pain) They are doing surgery on the 16th to remove it. I am asking for prayers for our family and specifically for him. Pancreatic cancer has a dismal recovery rate and 5 year survival so he needs as many prayers as possible to get him through this (also pray that the mass is benign). Thank you. Sara Mods - if this is not appropriate or should be placed somewhere else on the forum, please delete or move. Thanks.

I used to get awful cramps. They have since eased after I have gotten older. (Not that old though- only 23) I found that motrin wouldn't ease the cramps necessarily, but it would cut down on the other symptoms. Motrin (Ibprofen) is a prostoglandin inhibitor as well as an anti-inflammatory, so it cuts down on some of the hormone related symptoms. I was taking a decent dose of Motrin (600mg) in order to just be able to walk around. One thing I found that helped was getting out of a bad relationship. I found that the less stress there was in my life, the better my cramps got. Now I'm down to 200mg of Motrin on occasion and some periods I don't need it at all. I would suggest you go see a gynecologist just to make sure everything is ok. There are some herbal things out there, like natural progesterone that might be a help too. Good luck to you. Sara

I was rear-ended by an uninsured motorist back on March 4. Actually, it seemed to initially make the POTS symptoms better. I think my body was more focused on the pain of the discs then the autonomic symptoms. Here's hoping that the symptoms from both get better. Thanks for your well wishes. Sara

Just an FYI for those living in CT or nearby. I saw a neurologist for nerve damage and spinal cord trauma related to my car accident. I explained to him that I had POTS and instead of getting the usual "What is that?" or "You look too healthy to have that?" etc, he was incredibly knowledgeable about the condition. Now bear in mind that I did not see him for the POTS but for nerve damage, but he was incredibly through with his examination (an entire hour) and I hope to go back to him for my POTS once I get the nerve damage/ herniated discs/ stupid **** car accident stuff straightened out. His name is Lawrence Bluth and he's out of Hartford Hospital. Excellent Doctor!! Sara

I know nothing about Fibromyalgia, but I found that when I was severely vitamin D deficient, it was my shins that were killing me. You might want to get that tested too, just to be sure, because Vitamin D deficiency is arguably easier to fix then Fibromyalgia. Best of luck to you! Sara

Have you tried Cranberry Juice or Cranberry Tablets. Studies have shown that cranberry juice prevents bacteria from adhering to the lining of the bladder. (I can provide the info if you want, can't find it now) My grandma always got UTIs and found that drinking a couple liters of cranberry juice when she first felt the symptoms really helped her and made it so she didn't get a UTI. I'm personally leery about low dose antibiotics, as I believe they breed stronger infections and don't help in biofilm mediated infections (which have been indicated in the case of recurrent UTIs) Good luck to you and I hope you feel better soon. Sara

Thanks to everyone for the support. I finally got a look at my tilt table results and I have POTS but I also have some other issues with my heart. During the regulated breathing tests on the tilt one is supposed to have heart rate variability. I don't. My PCP, who's a sweetheart, has recommended I go to Mayo or Cleveland Clinic or somewhere as the data just doesn't make sense to him or anyone else. So I guess I get to go traveling. Wish me luck. Sara

Hey everyone- I got rear-ended on Tuesday the 4th and wound up losing feeling and motion in my left leg. The motion has mostly come back, but the feeling hasn't yet. ( That is arguably the weirdest thing ever) My Ehlers- Danlos probably saved me from being paralyzed (according to the ER doc) because I dislocated my back instead of broke it. I know a lot of the members on this board have Ehlers- Danlos as well as POTS so I was wondering if anyone with EDS has ever had an injury like this and could comment. I know that generally we take longer to heal than others, but I'm actually quite scared as it's been a week and I can't feel my left foot and lower left leg. Thanks. Sara

I've never had any of those symptoms related to POTS, but that sounds a lot like an allergic/ anaphylaxic reaction to me. Did you eat or drink something new? I've found that if I have symptoms I'm not sure about, it's best to call the Doctor or go to the ER (yes even in evil flu season) just to make sure nothing else is going on, and that these new symptoms are part of my new baseline. Not everything is related to POTS and it's best to make sure there is nothing dangerous going on. Hope you are feeling better this morning. Sara

From what I've read and been told, people who got POTS after a virus or who got during late adolescence had the best prognosis for recovery. I would like to think that if your POTS had a distinct trigger (not genetic) there was a likelihood of recovery or remission. For those of us with some genetic component, (I have Ehlers-Danlos, which I believe precipitated this) the chance of recovery/remission is, I believe, much less. Hope that helps. Sara

Thanks everyone! Few things. I have decided to definitely get a second opinion, probably with a cardiologist who hopefully knows something about autonomic problems and EDS. Because of the severity of my asthma (I stop breathing when triggered) no doctor wants to try a beta even in a minute dose. The diagnosis was made based on a TTT. I'd really like to see my numbers to see what happened during the test. Thanks again. Sara

Regarding Pertussis. It really is making a comeback. There was an outbreak at my college about 2 years (when I was a senior.) And now there are antibiotic resistant strains out there. As for the vaccine, I'd be careful getting it. Maybe it's just my sensitive nervous system but I wound up paralyzed after my second booster shot (I think I was 2.) The TDaP, which is the current vaccine, is apparently attenuated Pertussis, so there should be less reactions. Hope that MacKenzie feels better soon! Sara