potsgirl
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Posts posted by potsgirl
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What was your pulse reading from lying to standing? The usual standard for a TTT is that your pulse raises at least 30 bpm, from, say, 60 bpm to 90 or over. I was told that when I did the TTT that they would give me nitroglycerin to see if it would produce a response if my own body wasn't doing it on it's own. In my case, I had such drastic numbers they didn't need to use the nitro.
Best,
Jana
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Yes, I also get twitching/tremors in various parts of my body. Usually it's in my hands or arms, and also my eyes will go back and forth in a fast, rhythmic movement. That's called 'nystagmus' and you can look it up on the I-net if you'd like. I have a problem with having an abnormal amount of ischemic lesions in my brain, which is caused by not enough blood flow to that area. Your neuro will probably do an MRI, and that'll give him a good indication of what's going on. I wouldn't worry too much, because there are many things that can cause the twitches, but I'm glad you're getting it checked out.
Cheers,
Jana
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I'm fortunate in that my family and some of my friends are pretty understanding. I have more of an issue - I feel like I'm complaining all of the time, and my boyfriend asks me at least once a day "how are you feeling?" I just feel like if there wasn't so much focus on my health, perhaps it wouldn't be such as issue?
Cheers,
Jana
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That thread you saw was under "Holter Monitor" and written by Sandyshell. You probably should try to PM her and find out the details...I know the device was named "Reveal". Hope this helps - I had sent this info on to another friend of mine who was also interested in a temp device.
Cheers,
Jana
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Suzy,
Boy, can I relate about the sleep. It takes me awhile to fall asleep, and then I feel like I just get fragments of sleep all night. I wake up around 3:30 - 5, and I just can't fall back to sleep again. So here I am this morning, with a cup of coffee, writing on the Forum at 5:30 in the morning. Yuck. David is having prostate surgery this Friday, so I know stress is playing a big part in this recently. His cancer is pretty bad, worse than originally anticipated, so it's a major stress zone around here right now. I just hope I can take care of him adequately during recovery! Sorry, that's my whine for today.
I hope that you find a suitable doctor, and that you start the climb out of the hole again soon. You've had enough!
Hugs,
Jana
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Ok, this is a new one for me. Does anyone else have problems with their rear ends getting numb from sitting/lying in a chair and bed so much? I'm not bed-bound, and I can move around the house and get out for walks a couple of days a week, but recently my rear feels like it's a mass of jello and it gets numb. Not an attractive feeling. What do you do?
Cheers,
Jana
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Kari,
Do you mean LTD with the state or with the Federal government? I've done both...Please send me a PM and we'll chat.
Cheers,
Jana
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I have this problem usually once or twice a year, when the seasons change, primarily. My doctor (went to an ENT, had testing done) has told me that since I injured my inner ear in a motorcycle accident many moons ago that I can get a virus that settles in that damaged area and causes a lot of severe vertigo. You can also certainly have the viral issue without an injury - a virus can settle anywhere in the body. It's so bad I can't drive, sit up for long, or turn my head without the room rocking, loss of balance, nausea, etc. Usually my episodes last about 2 weeks, and then they gradually go away. I agree with your doctor - the best thing for it is Dramamine or Meclizine (rx - Dramamine works just as well). Let us know if this helps you!
Cheers,
Jana
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I have taken Paxil for the last 10 years or so, and have never had any side effects from it. In fact, I think I lost some weight on it. When I tried to switch to Prozac about a year ago, though, it made me really hyper and more anxious, and I was primarily taking the med for anxiety issues. Unfortunately, it's one of those things you have to try on your own, and you have to be willing to stick with it long enough to see if the side effects will go away...obviously, you've tried long enough! Usually 4-6 weeks are enough. 45 pounds seems like a lot to gain, and possible detrimental to your health as well, depending on your original body weight. Check to make sure you're not having thyroid or other issues, and I hope the next one works better for you! I'm pretty sure SSRIs are given to quite a few people with POTS, since they generally tend to help with symptoms.
Cheers,
Jana
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I love to have my Riesling or White Zin, but don't drink it very often due to some of my meds. It makes me feel a little better if I don't drink it too quickly. Otherwise, I feel almost drunk off of one glass of wine - which is probably due to how rarely I do drink. I usually have a glass every 2 - 3 weeks, but may increase that to see what happens. Darn it.
Cheers,
Jana
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Both Florinef and Midodrine are supposed to help with that condition, although Midodrine seems to me to be a little more of an 'energy' drug. I only use it when I really have to have some extra energy, and then I only take 1/2 of a .25 tablet. If you're sensitive to drugs like a lot of us are, I would start very slowly with your doctor's guidance. Lots of water, salt, and compression hose like Firewatcher recommended can also help.
Cheers,
Jana
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Which Mayo Clinic location are you referring to? I've been to both the Scottsdale and then the Rochester, MN centers. I saw Dr. Brent Goodman, a neurologist with a subspecialty in POTS at Rochester, and loved him. I think one of the most important things to remember at any of the Mayo Clinics is to make arrangements to stay longer than your initial appointments if necessary. You may just see your doctor first, or your doctor and have a couple of tests run, and then they usually will refer to you to other tests/docs as necessary. Usually these appointments are within a day or two of your initial visit. When I went, I was scheduled for 3 days of appointments (over a weekend), and then we ended up staying 10 days.
If you're going to Rochester, there's a great underground walkway system that connects to a couple of hotels. Very easy to get around, and the cafeteria food isn't half bad!
Cheers,
Jana
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R,
I have the same...white hands and feet no matter what position I'm in - and they're freezing all the time. I'm also usually very pale. Do you know the particular form of POTS this is?
Thanks,
Jana
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I'm afraid I'm not much help...I tend to stick to sites/companies that I know and that other friends have also used.
Cheers,
Jana
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Paige~
Way to go! I'll bet it really gave you a mental boost to get out of the house with your boys. I'm sure they saw it as a special treat, too. After awhile, at least with me, I just didn't bother with the make-up and much fuss about going out. To me, it's more important both physically and mentally to get out, even if it's just for a 15 minute walk, or to stop at the grocery store (with supervision and a ride!) I try to plan my week so that I do one 'major' thing most days. I don't always make it, but it gives me a goal. Therefore, I wash my hair twice a week, and shower 6 out of the 7 days. On the days I do my hair, I know I won't have much energy left, because I have long, very thick hair. If I'm going to exercise on certain days, usually Mon, Tue, Thur, and Sat, I know I won't have much energy the rest of those days. Exercise is very important to me, however, so I choose to expend my energy on that most days. If I want to do lunch (believe me, very rarely), I make sure it's not a hair/exercise day. This planning isn't perfect by any means, but it gives me goals and there are many weeks I have to move things around, but mentally, to me it's a huge thing to get out at least for a little bit!
Wishing you the best,
Jana
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This is quite a common occurrence in people suffering with POTS. I know I've seen this thread a couple of times on this site...You may want to look it up.
Jana
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if you do, please let me know what you find out. I have POTS, but also suffer from severe hypotension. I'd be willing to help if need be...
Thanks, Jana
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I seem to catch MORE colds and crud going around since I've been diagnosed with POTS. And when I do get something, it seems to take three times as long to get over it. I have a friend here in town with POTS, CFS, etc, who is the same way. I know it sure hasn't helped my allergies at all, though of course they're not the same as a general illness. I'm really careful to wash my hands often and to try not to touch handrails, door knobs, and other items the general public generally uses. I'm not crazy about it, just try to be smart and not spread germs.
Erika, whether it's a cold or not, I hope you're feeling better soon!
Cheers,
Jana
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I'm sorry that you're in this situation. I know with certainty that I simply could not go back to work right now if I absolutely had to...Have you checked into other options? There is help through the county, state, and federal government. Have you applied for any help or disability? I'm currently getting long-term disability from my old job, and I just was approved for federal disability. If you could get fed disability, it should take the place of a part-time job and much cheaper insurance than you're probably carrying right now. If you need to work in the interim, perhaps a job from home? That would have been my solution if I didn't get my disability. Don't give up - there are lots of ideas out there.
Wishing you the best, and let us know how you're doing.
Jana
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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
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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
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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
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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
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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
Hydration Is Important - Drink Drink Drink Why?
in Dysautonomia Discussion
Posted
My kidney functioning goes up and down, so I have it checked every 4-6 months. My nephrologist is sure that it's caused by my low blood flow to my organs. I also had to have my gall bladder removed, and my doctor thought my low blood flow probably also contributed to that.
Cheers,
Jana