potsgirl

Hi Garrett~

You are definitely not alone! Not only my illness but some of my meds make me feel like a total space queen too much of the time. I also forget common things I used to remember, but what really frustrates me is when I lose track of where a conversation is going, or want to tell somebody something, and then I forget what it was. I'll also do things like try to put the coffee pot 'back' in the fridge, or things like that. Some days are better than others, though, and hopefully that holds true for you, too.

Don't try to let it get to you too much. I think the majority of us suffer from it. Just be patient with yourself, and it'll come to you eventually. When you're stressed, of course you'll have a bigger problem with it, so learn to try and relax, and perhaps meditate or do something that's calming for you, whatever that may be.

Take care,

Cheers,

Jana

I'm so sorry that you're in such pain. I certainly wish there was a secret or something I could tell you to take to overcome it, or at least tame it down a little. Have you been to a specialty clinic yet? Mayo, Cleveland Clinic, etc? That may be a good choice for you if your doctors have nowhere to go anymore and you're still in such pain.

I'm sending soothing thoughts and positive energy your way, and a gentle ((((((hug))))))

Cheers,

Jana

Thanks for all the input, ladies!

I am scheduled for an EMG soon, and then I'll be going to a neurological specialist in about 8 weeks. I'm really hoping I can get in earlier. It's in both of my hands now, and my feet have started with the early signs. Until I see the specialist, I won't know what's causing it, but thank you for all of your suggestions.

Pat57: Sometimes ice helps, and sometimes heat. I've tried "Icy/Hot" but the smell is too overpowering. My first 300 mg dose of Neurontin kicked my rear yesterday and my BP/HR numbers this morning are not good. I couldn't use Lyrica, so hopefully I can tolerate the N. Sorry you're suffering, too.

Issie: Thanks for the info here and on email!

Reen: No, they haven't done a bone scan yet, but I'm sure it's coming eventually. I have nodes growing on my knuckles which really notch up the pain. I'm glad your splints worked for you. I'm definitely going to try that. I may look into the lidocaine patches, too.

sunburnt_land: Thanks. Swimming is a great idea if my feet get any worse. Right now, I'm trying to keep walking on the treadmill for my osteoporosis.

BellaMia: You sweetie. As above, yes, I'm scheduled for an EMG soon. I thought I had carpal tunnel, but that's not the case. Typing does hurt, doesn't it? I may be looking at voice to text software also as this syndrome is supposedly progressive. HUGS back at cha!

Thanks to all! You're life-savers.

Cheers,

Jana

I'm sorry you're feeling so terrible and have so much going on! I'm in perimenopause, and it really kicks my rear and makes me feel much worse, too. I can also relate to your BP numbers, especially in the heat. I can hardly make it to our mailbox and back. I usually get the mail from the day before in the early morning hours when it's cooler.

You're not alone, and I'm wishing positive energy for you and that you start feeling better very soon!

Thanks for the encouragement, and I'm sorry you have to deal with chronic pain, too. I took my first dose of Neurontin this morning, and I feel drugged and dizzy. I took 300 mg, and I'm supposed to set up my dosage slowly. I really hope this works, since the Percocet and Lyrica just didn't seem to do anything.

Do you use any kind of wrist/hand brace to help you with things like typing? I've been thinking about trying that.

Thanks again, and best wishes~

Jana

Hola!

I was just diagnosed with complex regional pain syndrome and am wondering if anyone else on the Forum has heard of it before. It's a neurological disease, uncommon, that affects your hand(s) and/or one or both of your feet. It started with pain in my right hand, the middle knuckles especially, but now my whole hand, wrist, and up to my elbow has so much pain I can hardly stand it. It's starting to affect my left hand, too, and my feet have also shown symptoms.

It's very scary because I can't drive or open jars unless the lids are loose, can hardly type, and have to hold the phone with my left hand. There is no cure, and it can continue to be progressive, moving across your body. I've tried Lyrica, which didn't help, and today I start on Neurontin, which will be a new drug for me. Any experiences with Neurontin? I'm seeing a specialist in early October.

Any input will be appreciated!

Cheers,

Jana

BellaMia~

Thanks for posting that site. I always get confused about which pain reliever works best for pain but not inflammation, and I also have upper abdominal issues.

Cheers,

Jana

Wooooo-Whooooo! Way to get out there and live some life playing frisbee. Yay for you~

Good point, Yogini, although I got mine due to bradycardia, and never had an ablation. If the pacer is put in solely to help with bradycardia, I say go for it. If it's POTS you're wanting to help, then I'm not so sure. I know I certainly benefited from the pacer for my low HR though, giving me more energy and less worry. But it's certainly an individualized decision. My doctor was quite firm on what I needed, and I had seen a cardio from Mayo at the time.

I hope this makes you feel better....I had an MRI of my brain about 5 years ago, and had what they called "an abnormal amount of ischemic (dead spots) lesions in my brain for my age." I was 42. They said that everyone gets them as we age, and they may do some additional testing to make sure there's nothing else going on, but usually these are nothing to worry about. In the last year or two, when I went to see some neuro specialists, they looked at my MRI and believed that one of my larger lesions was probably a small stroke. They can't do another MRI to check it against the older one, because I now have the pacemaker (4 years ago) and they can't do an MRI with a pacer. They weren't too upset, however, and did a test for seizure activity, which came up normal.

I had a CT scan of my brain about 4 months ago that now shows an abnormal loss of brain matter for my age (48), and more lesions, and I know I have nerve conduction issues with chronic pain. I'm going to Barrow Neurological Institute in early October to have that checked out, because my doctor wants me to go.

Unless it's something major, most changes in your brain are normal and part of the average aging process. Mayo will certainly do any testing they think is necessary, and you have a baseline CT to show them. If they're concerned, they'll probably do an MRI or function/nerve conduction testing. Please don't worry too much. If there is a problem, it's better to find out now, at the Clinic. Let us know!

Cheers,

Jana

I go between insomnia and wanting to sleep almost all of the time. Sometimes it's okay because it's how I can get through the day when I'm really feeling awful. I get up early, around 5-6 am, take a nap around 2-3, and then back to bed between 4-6, where I read for an hour or so and then am asleep by 7-7:30. Thank God for books and and recorded tv programs!

Hope you feel better soon.

Cheers,

Jana

I couldn't take BBs, either. I would go ahead and get one put in. I do think it helps, if only for your peace of mind. The only disadvantages I can think of is that you no longer can have an MRI, so get any of those done if you need to before they put in the pacer, and that you have to be 'hand-patted' down going through security at airports. I was a little embarrassed by my pacer showing through thin or scoop-neck tops, but that can be avoided and it gets better with time.

I think that the possibility of a pacemaker helping you have a little more energy and keeping your heart rate stable is worth it. I would go ahead.

Cheers,

Jana

I highly recommend having someone come in to clean twice a month, if you can afford it. Right now we can't, but it's certainly fantastic if you can.

Hi Brye~

You're right - I am one of the ones on the Forum who has a pacemaker. My dysautonomia started after I got really sick with CHF and dilated cardiomyopathy. I also had bradycardia, where my heart rate was dipping into the 30s and 40s. I think it definitely helped me feel better, knowing that my pacer was there to kick in anytime my HR tried to go below 60 (where it's set now). I think it helped me with my energy when I was dealing with my heart disease, so I would give it a positive review. I've had it for 4 years now, and was diagnosed with dys. about 2 1/2 years ago, so I'm not sure if it's helped with my energy since then. It is peace of mind, however, and then they can get read-outs on everything your heart has been doing between "check-ups" with your pacer, about every 6 months.

Let us know what you decide, and good luck!

Cheers,

Jana

POTS is defined by your BP and HR. Normally, with POTS, when you go from lying to standing, your HR should rise at least 30 bpm but your BP shouldn't fall much below 10-15 points, if at all. Some people's BP go up quite high, too. There is some disagreement among the medical community on what constitutes POTS....my doctor from Mayo doesn't think I have POTS (but definitely dysautonomia/severe orthostatic hypotension) because my BP drops so much on standing. My cardio here in Tucson disagrees. I'm also a fainter because my BP gets to low while my HR goes up too much.

Here are some of my average numbers:

Lying: 100/70 BP; HR: 60 (would go lower but I have a pacer for bradycardia)

Standing: 75/65 BP; HR: 125-135

Sorry I'm not very familiar with PAF or AAN. Hope you're feeling better soon!

Cheers,

Jana

I have sleep problems almost every night, too. It comes and goes in severity. I think a lot of people here suffer from the same thing, and many folks have sleep apnea. Have you been tested for that yet? Could you be going through perimenopause or have you started a new drug?

Hope you find relief soon!

Hi Maggie~

Yes, I realize you're doing an individualized program. Sorry to be confusing, I was responding to both you and then wondering where the other posters above me had found Dr Levine's program. I think it's terrific that you've found someone to create a program for your needs! I think that's what we all really need, since we all have different exercise capacities and illnesses. Please let us know how the program goes, because I would love to find something like it.

Kudos to you for searching this out~

Cheers,

Jana

I found something a little different to use for my identification. You can find these sturdy, webbed with velcro bracelets online under 'Road ID'. They have a stainless steel plate on the front, which gives you 6 lines of information. They're comfortable, and you can pick your color. They're also about $20. I love mine, and it's lasted for over a year and is still in excellent shape. Very easy to read and for someone to find. They have examples on their website, but I have my name, my doctor and hospital's name, my ICE name and all of their phone numbers including my diagnoses.

Just an idea!

Cheers,

Jana

It sounds like chronic fatigue syndrome to me, which often occurs in people with POTS>

Maggie - That sounds great. I certainly don't think that moderate exercise can hurt you, and it will probably help you with at least some of your symptoms. I've heard of Dr. Levine's exercise study, but can't seem to find the details of the program. Anyone know where to find it?

Everything I've read and from what my GYN tells me, women shouldn't use douches, bubble bath, scented soaps, or even soap in the vaginal area. I have a really hard time with the last one, but supposedly your vaginal system is meant to be able to cleanse itself. Certain detergents or even using dryer sheets on your undies can also cause irritation and infections. I stick to white cotton underwear except for special occasions, and dry my underwear separately. I also use the 'Free and Clear' version of my favorite detergent.

Hope these hints help, and glad you're feeling better, Lieze.

Lissy,

I really liked what Tearose wrote. She covered it pretty well. I only have very brief periods of remission, maybe a day here or there when I can do a couple of errands and maybe make it to a movie. That's definitely a 'long' day for me, and I'll have to rest for the next day or two to recover. I don't shower every day, probably 4-5 days a week, and do my hair twice a week. Then I just let it dry. It's making sure that you're saving your energy as much as possible, and not sweating the small stuff. It is certainly difficult not to get too discouraged, though.

I'm really sorry to hear that you're in a low period right now. I'll be in it with you. Together we can try to stay positive and hope for the best. There are so many difficult things about being in a down period, but I think one of the worst things is the isolation. I used to be so social, and going all the time with a job I loved, staying physically active, and now most of that is gone. We got a treadmill so I can at least walk on the days that I'm up for it, and the Forum and email is great, but it's not the same as getting out with your friends or making new ones.

I'm also going to start seeing a psychologist who deals with chronically ill people, and I think that will help my frustration and depression when it hits. Now if I can make it to the appointments!

Take care, and I'm thinking of you,

Jana

Maxine~

My heart goes out to you having all of these troubles right now. Sometimes I feel that traveling is just not worth the price some of us pay when we get back and have to recup for days or weeks.

Believe it or not, someone here on the Forum has had the same trouble you're having with smelling smoke. She swears she can smell it coming through her walls. She lives in a townhome and shares a wall with her neighbor. It was driving her crazy, too. I'm not sure if she ever figured that out, but I'll check with her.

Hope you're feeling better soon!

Cheers,

Jana

How interesting. Thanks for posting this. I know I should get a sleep apnea study done, but I have a hard time going to sleep in the best of circumstances. I don't think I could ever fall asleep in a 'study bedroom'. Anyone have any tricks?

Good to hear.