potsgirl

I must say that my BP is rarely normal, but I also suffer from tinnitus and the whooshing you're describing. I don't have it nearly as badly as you, however. It feels like I'm 'hyper-aware' and occurs most often when I'm lying down or in certain positions. I hope you find something that helps, and please, let the rest of us know. Cheers, Jana

I, too, used to enjoy a glass of wine almost nightly with dinner. Now I have one with dinner only if it's a special occasion, and basically never just stop by for a drink with friends if food is not involved. I probably drink one glass of wine perhaps once a month. I do miss it, but I don't like feeling drunk and woozy after just one-half of a glass of wine! (Although I do get rather clever....) Best, Jana

Hi Rene, I'm sorry you're battling with yet another issue! I get nauseated from time to time, but usually not enough to give me the dry heaves or cause me to vomit. Sometimes I'll take Maalox Advanced Extra Strength in fruit-flavored tablet form, which is the only OTC drug I've found to help. I think you might be able to use it, it doesn't have a lot of extra ingredients. You could try just 1/2 or 1 tablet to try it out...I have some friends with POTS who have gone on gluten-free diets, and that's worked for some of them. I know that I've restricted my diet to foods that I know won't upset my stomach too much, but I still have a lot of bloating. Ugh. It's like having your period 24/7. I'm sure you'll find something that will work for you, never fear. It'll just take some experimentation. Hang in there and be well! Cheers, Jana

Brye, I've had heart rates in the 30s for extended periods of time, and I had a pacemaker put in. I was very symptomatic and the pacemaker did help give me more energy. Plus, I don't worry anymore that my heart will just slowly stop beating - probably an irrational fear, but a fear just that same. I had just been diagnosed with cardiomyopathy/congestive heart failure, but not diagnosed with dysautonomia yet. I was diagnosed with that just a little over 2 years ago. I probably had it during the heart problems, though, which was 2 years earlier. The only downside for me is that you do have to replace pacemakers every 6-10 years, and you cannot get an MRI with one placed. Only CT scans can be done. If you want to PM me, feel free. Cheers, Jana

New & Improved Causes of Hair Loss (you're right, Maxine and others, my stylist is WRONG. Washing hair daily/too much brushing does NOT cause hair loss), but these things do: 1. Illness and surgery ~ Usually occurs approximately 3 months afterward, due to stress. 2. Hormonal issues 3. Medications ~ Such as blood thinners, birth control pills, and anti-depressants 4. Infections ~ Usually fungal in nature 5. Certain diseases ~ Including lupus and diabetes It's important to figure out why you're losing hair so that you know the cause and can treat it appropriately. Hereditary, POTS?, other reasons listed. Cheers, Everyone

I'm afraid I don't know what volume loading is. Please enlighten, Mr. R. Cheers, Jana

Yay, Suzy! How terrific that you had a little better of a morning, and more importantly, felt better about yourself. Bravo. Let's all take the little miracles we do receive, and appreciate them to their fullest. Cheers, Jana

When is your SSDI hearing? I just had mine 2 weeks ago, and one thing to remember to highlight is the unpredictable nature of our illness. We don't know how we'll feel from day-to-day, if we'll make it in to work, or even out of bed! If you have any questions about SSDI, you can PM me. Hope you win your case! Jana

I go through cycles with bad headaches/migraines. When I'm in a migraine 'cycle', I usually have them daily for weeks on end. Then they'll disappear for about the same amount of time. When I'm in my bad 'cycle', the only thing that helps me is Darvocet or Percocet. That, and lying down in a cool, dark room for a couple of hours to let the meds work. I've tried shots at my PCP's for the migraines, but they don't seem to work. Hope you feel better soon! Jana

My deepest condolences on the passing of your grandfather. You have been such a blessing to so many of us here on the Forum, that I know many of us would love to be able to be there for you in support and give you nice warm hugs. Please draw strength from those of us on the Forum who are thinking of you and sending our thoughts your way. Take care of yourself, Jana

The only time I've lost hair has been either from meds or high stress. Have you noticed the correlation between any meds you take and your hair loss? Are you under more stress than usual? The other thing I do to try to avoid hair loss is to only wash my hair 2-3 times a week. If you get really oily, you can use the 'dry' shampoos that are out there now. The more you wash and brush your hair, the more you can lose. Hope this helps. Cheers, Jana

Hey you, I've been waiting to get a response from you, I've been worried! Please email me soon.... Hugs, Jana

I take both a multi-vitamin and B-12. I just started on the B-12 about 2 weeks ago. So far, I haven't been able to tell a difference, but it certainly hasn't made me feel worse. My PCP and neuro thinks it's worth a shot, so unless it causes bad side effects, I'll keep taking it. Peace, jana

I really like the calendar idea. Marking out our good days, or at least better days, shows us that the bad ones aren't forever. I'm also on an A/D and see a counselor, especially when too many things come up and I'm overwhelmed. I wish you the best, Suzy, and to feel better very soon! Hugs, Jana

Thanks, everyone, for their helpful posts. I've upped my B12 (thanks mccaimless), and my Mayo neuro said to get a CT done since I can't have an MRI (pacemaker). The other possibility is that it's a symptom from my pain meds, Oxycodone. However, Lhermitte's (thanks Jan) is enough of a worry that I need to be scanned. I'll leave an update when I have that done. Thanks! Jana

Hola my Forum friends! It's just about gotten to the point where I can't stand to go to movies lately. Is it me, or has the sound increased to a point that's ridiculous? I've even tried earplugs, but usually to no avail. It just to be one of the few social outings I could go on, but now I find myself renting movies more and more. Anyone else? Cheers, Jana

This sounds like it may be an infection. Have you gone to an ENT yet to rule that out? I think I'd gargle with salt water, and get in to see my ENT soon. Cheers, jana

Hi Jess, I've also heard about these full-body scans and done some research into them. Everything I've read so far is more negative than positive, and most doctors don't agree with this process. It's too much radiation, and can do more harm than good. Like others here have said, I'd definitely only do a CT or MRI scan of what body part is creating the most problems for you. If you do go ahead and have it done, please let us know what it was like... Cheers, jana

This is terrific, Nauthiz! Thanks so much for posting it. I've never seen one like it before. Jana

Erika, I get blood pooling in my feet like you do, but usually it's much worse in my abdomen. I'm always 'bloated'. How lovely. I think part of it is also from my whacked-out digestive system. My feet do turn red and purple when I stand, though. Cheers, Jana

I'm in Tucson with a doctor that has about 5 POTS/dys patients. I've met one so far, and she's very nice and my age. She's had this illness for 20 years, while I've only had it 2, so she's a good resource. She lives on the outskirts of the city, though, so it's hard to get together, especially with both of us sick off and on! Still, I chat with her by phone and email, FB. Cheers, Jana

I'm also on board with EM and FW. The best, most understanding doctor I have is my PCP, who is a PA. She is willing to learn about my illness, spends a considerable amount of time with me, and is just truly a terrific person. My only grievance is that she's on the other side of town, after leaving the original practice she was with...but, she's still worth the drive! cheers, jana

I think some of us bruise easily. I know I do. Even something like carrying a shopping bag on my arm or wrist will cause a deep indentation that stays for hours. Very weird, I know.

Hi Stacie~ I recently went to see a highly recommended plastic surgeon about a breast augmentation. Like you, after pregnancy and a large gain/loss of weight, my breasts are rather sad and forlorn, so as I get older, they get worse. My plastic surgeon would do it, but only at the hospital with an anesthesiologist right on hand. Our blood pressures can go all over the place while under anesthesia, so they need someone to be there to monitor it any time we're 'under'. In fact, when I had my gallbladder removed 4 months ago, I had to wear pressurized boots, too. I have a colonoscopy coming up, and I have to have that at the hospital instead of at the office.. My doc also told me that the pain is usually incredibly bad the first couple of days, and then it slowly lessens during the next 2 weeks, as April wrote about. I would love to have this done, but right now am too scared to try it. Please let us know what you find out. I'm not trying to be discouraging, just factual. If it works for you, you have to let the rest of us know! Cheers, Jana

This is terrific! They'll be a whole group of us going to doctors armed and ready. Anymore, you really have to be in charge of your health care! jana