potsgirl

I know this topic has been written about a couple of times before, so you may want to do a search on 'SSRI'. I've been on Paxil for about 10 years, and it certainly has helped me. I had to start on 5 mg, went to 10, and am now maintaining on 15 mg but I also take Clonazepam to help with anxiety and sleeplessness. The combo is just right for me, but we're all different, so you will probably have to do some experimenting to see what helps you out the most. Just start slow and give the drug enough time to work....

Good luck & cheers,

Jana

I think that's why it bothers me so much....I used to be quite the 'social butterfly' and could do several things at once and not give it a second thought. Now, it's a big day when I'm going to wash my hair, and I literally have to plan it out. It has to be a day where that's my primary (and usually only) activity that day. Then I need about 4-5 hours for my hair to really dry before I can lay down on it. I have long, very thick hair, which is both a blessing and a curse. I can't even hold my blow dryer up for longer than a minute or so, so when it does get chilly, I simply don't leave the house until it's mostly dry.

I did have permanent liner tattooed on my eyes several years ago, so I have that much make-up that's there whatever I do. Otherwise, it's just undereye concealer (anyone else with the major dark circles?) and blush. By then I'm exhausted. Doing full make-up....hmm, that'll have to be a really high energy day or a very important event for that to happen!

Thanks for letting me know I'm not alone. Hopefully someday we'll all be more of our social selves! If anyone has any tricks, now's the time to share....

Jana

Hola Forum Friends~

I think something similar went around the Forum before, but my personal habits keep slipping and it's frustrating. I was used to working and showering/blow drying my hair/doing my make-up and dressing up every day. I sometimes really miss that (sometimes not), and I wonder if I made myself do a little more routine 'maintenance' if it wouldn't help me feel a little better. Anybody have thoughts?

For instance, I:

~shower about 4-5 days a week, sometimes do a 'sponge bath'. Shave 2x/week

~wash my hair probably 2 times a week, sometimes only once, when I'm really feeling sick. Then I just let it dry (that's okay, it's wavy).

~hardly ever wear make-up, unless it's a special occasion, and then it's undereye concealer and some blush (I'm so pale!)

~tend to be in my 'lounge wear' (men's pj bottoms and tees) most every day, unless I'm going out, which is only once or so a week.

Please tell me I'm not alone! I just don't have the energy anymore.

Cheers,

Jana

Thanks, Issie. I have a TJ's about 2 miles down the road. And yum...toasted pecans with salt!

Cheers,

Jana

I was on Neurontin for about a week, but had to stop because it was dropping my BP too much and giving me nasty headaches. Both Lyrica and Neurontin did that...and did almost nothing for the pain in my hands and feet from my small fiber neuropathy. Sorry, but I'll have to echo Elizabeth, I'm not sure about the abdominal pain, but I'm really sorry you are having to go through this withdrawal.

I'm currently on Percocet, and I hope that it doesn't cause nasty symptoms coming off of it, although I am on a low dose. It's done the most so far for the pain, but that means just taking the edge off. I have an appointment at a pain clinic coming up soon, and am hoping for some nerve blocks. Have you tried that yet?

I would call my doctor just to make sure you're doing fine. Let us know how you make out.

Hugs,

Jana

Yay! I'm so happy that something is working for you and you're feeling better. Sometimes an SSRI really can make a difference in how we're feeling, because really, many of us actually do have some anxiety or depression in our backgrounds. I take Paxil and I know it makes a difference to me, even in feeling that there is hope - as you've shown us!

Enjoy your days and let us know how you're doing as this continues for you!

Cheers,

Jana

I have an excellent internist in Tucson, and also a cardiologist I really like. Phoenix is close enough if you need to go to Mayo in Scottsdale or Barrow in mid-town. I would chose Tucson over Phoenix, just because it's not quite as hot, and it's more of a 'small town atmosphere'. You should be able to meet all of your medical needs between Tucson and Phx. If you're coming to AZ to check things out, it would be great to meet with some of the others in the area. We do have several POTSIES here.

Good luck!

Jana

Ajw~

You may well be right. I'll know more soon. Thanks for the post!

Hi Issie:

No, I don't think EDS is involved at all. The chronic foot and hand pain is probably caused by small fiber neuropathy, which may be caused by amyloidosis. Several doctors have mentioned this, so we'll see what my results show at my test two weeks from now.

I don't think MS is the culprit either, because I have been tested for that a couple of times and it doesn't seem to be an issue. I'll certainly let you know more about it when I do, and hopefully it will be in person after some of these tests are done in Phoenix.

Arizona Girl~

That's where the 'suspected' comes in...they're doing nerve testing to get an idea of the extent of the damage and other info that they really didn't seem to want to go into - I think they didn't want to overwhelm me. They told me that with my symptoms that there was a small number of things that could be causing this and my other heart/POTS issues. One was diabetes, which I definitely do not have, the other is amyloidosis, which is hard to find even if you test for it. They didn't want to discuss the other possibilities until I have my amyloid and other tests completed.

The only course of action they want me to follow right now is to get on a better pain treatment regimen with Methadone, which I'm leery of...I was hoping for a nerve block or something similar, because my hands and feet up to my knees are in constant, severe pain.

You're right, you did give me Dr. Levine's info before, but I misplaced it. Sorry!

Take care,

Jana

Thanks, Brye!

Today it seems to be fine...But I can't seem to figure out how to post a reply to each person individually, so I end up writing to each person at the end of my initial post, taking up lots o' room. Please let me know if there's a way to do this, like we used to do.

Thanks!

Jana

I'm so happy that this seems to be working for you so far. Having a routine at home is so much more convenient than having to travel back and forth, especially for those of us who can't drive.

Keep us posted on how it's going! Good job for being creative to get your needs met.

Cheers,

Jana

Hello All~

I had my consult at Barrow Neurological Institute in Phoenix on Monday. My CT scan shows a greater loss of volume and more ischemic lesions than normal for a female of my age (46). While my PCP forgot to send the disk (of course) of my scan, I still had a full work-up. It is suspected and almost certain that I have small fiber neuropathy associated with a form of amyloidosis. Amyloid has been brought to my attention as the probable cause of my autonomic dysfunction several times, and I have a test set up for that in two weeks. I also have a nerve biopsy and some other tests coming up in September at Barrow.

I also found out that I have 'autonomic hyperreflexia', which means that I have very hyper reflexes at my knees and elbows. Anyone else heard of this or have it? There's a scale that runs from 1-4: 1) abnormally low response; 2) normal response; 3) slightly hyper response; and 4) very hyper response.

Thanks for any input!

Cheers,

Jana

Congratulations on making it through all of the difficulties of getting approved for SSDI! Now you really can concentrate on getting better and have one large stressor off your shoulders.

Issie~

Wow - great job on the research! These are topics I really don't know much about, and with my brain fog today it was a little difficult to comprehend everything, so I'll give it another read later. I also feel better without eating as much salt as my doctor advised me to eat, and will be trying Himalayan salt, too. I am hypotensive, but all of that salt is wearing on my stomach.

Cheers,

Jana

Tuesday,

I'm really sorry you had to endure such nastiness. I'm not trying to be annoying, but it makes me feel so lucky to have never had a doctor treat me like that. No "it's all in your head" stuff at all. Thank God for those doctors who really get it and treat us with respect.

Please find someone else who will treat you with the respect you deserve!

Absolutely! I go up to bed about 5:30, read until about 6:30 to 7:30 (on a good night), and wake up around 5:30 - 6:00. After lunch, it's more reading and hopefully I fall asleep for a nap for an hour or so between 2-3. If it weren't for the computer, my books, and recorded tv shows, I'd go more crazy than usual. I was walking my treadmill mid-morning a couple of times a week, but two weeks ago I broke a toe and it's still too painful to work out yet.

EEERRRGGGHHHHH!

Where'd my life go??

Rachel~

I am very sorry to hear about your health taking a turn for the worse, at least temporarily. I would certainly have my neurologist check things out, since you're having a lot of confusion and other neurological issues. I can related at least somewhat, since about 4 months ago I have developed chronic pain in my feet and hands (they're pretty sure it's amyloid associated small fiber neuropathy - more testing soon) and it's making my life miserable as well. I'm heading for a chronic pain clinic...hopefully very soon.

Get in to see your team as soon as you can, and perhaps they can shed some light on what's going on with you, and figure out a way to make things better. I know sometimes I get very fatigued and will need a 'bed day' off and on, but it once a week or two is frustrating for me, every day must be very difficult for you!

Hang in there. I'm sure they'll get to the bottom of this soon, and you'll be up on your feet again.

My best,

Jana

Let me know if you find something. I personally would love to work/volunteer in a museum since my background is cultural anthropology. Let's both find a creative job involving something artistic and/or cultural!

Friday7~

I know exactly what you mean, and I would love to volunteer, too. I know also that most places where I would volunteer (similar to a workplace) would need someone they could rely on to be there certain days or times during the week. Anymore, people really count on volunteers, and if we can't make it in, normally they would have to find someone else to replace us. That's why I left my job and why I don't consider myself up to volunteering yet.

And please, no offense, but you may want to change your verbiage from your "list of demands" to sounding a little more willing to work and compromise if possible. If these things are absolutes for you, then it may be hard until you're a little better to find a volunteer position. Perhaps something on the Internet?

Good luck,

Jana

Nina~

I'm praying for you and sending you lots of positive, healing energy. I'm sorry you're having all of this hitting you at the same time. Give yourself plenty of time to grieve over the loss of such a long relationship, and try to stay in the moment as much as possible until your testing is completed and your results are known.

Remember, there are so many of us here that are thinking of you! I'm sure everything will go well, and please let us know what happens.

Hugs and serenity,

Jana

Hi Issie~

It does sound like you might have some other issue, I agree with tearose. My doctor told me to just wear my compression hose during the day, but I would check with your doctor and see what they say. Good luck!

Hugs, J

Tablet,

Since no one else has really addressed your BP during the tilt and your everyday readings, your BP is also consistent with a POTS diagnosis. As you've read, your HR should increase by at least 30, but your BP from supine to standing usually should vary a small amount for what my Mayo doctor considers a true "POTS" diagnosis. Some physicians disagree with this, but I think it's the norm. I found out that while I didn't have POTS per se, because my BP goes from about 105/70 supine to 75/60 standing, I do have other dysautonomia problems, especially orthostatic hypotension (a large drop in BP when going from supine to standing and causes symptoms such as fainting).

Is it possible for you to go to Mayo/Cleveland Clinic/or any of the other recommended doctors/clinics listed on this site? To me, you sound like you have a classic case of POTS. Welcome.

Cheers,

Jana

I also got in a lot quicker to see a neurologist when my PCP called and asked them to move my appointment up. It certainly can't hurt to ask your doctor to call in the referral! Also, you might want to let them know the situation you're in, too. Make sure you let your disability rep know the situation, also. They'll usually work with you. You can always provide proof of when your appointment is.

Good luck!