somethings just not right

[blackwolf]

I'm not sure what is wrong, but I KNOW somethig is.

I already typed about the sudden sleepy trouble. Recap-Since just before Thanksgiving, I've been suddenly falling alseep, sometimes for hours. I fall immediately asleep, which I normally never do, and usually sleep several hours.

But now things are just plain weird. I have had a constant pain in my neck and upper back that is TERRIBLE. If I move certain ways, I get this cold and prickly feeling all over my neck, back of head, upper back and shoulders. I'm also jerking when I sleep, or just as I'm falling asleep, Hard enough to hurt myself and waking me and my hubby up. He says I'm grunting and groaning in my sleep, too. We don't even sleep together! He sleeps in the recliner, I'm on the couch. Another thing, my "clumsiness" is really bad, I'm even using my cane around the house. My doc took an xray and said "I don't see anything, go home and get some rest, you just pulled something."

I have quit the Cymbalta, so I know it isn't that, not been taking for about 11 days now.

I'm also nervous feeling, like waiting for something to happen. This is new to me, this nervous feeling, I have never flet like this, except the first few months of being sick, and not knowing what was going on.

Help please.

Blackwolf

[Guest tearose]

You have been dealing with this calmly for so long! You obviously didn't sleep well last night since it looks like you left your post at 3 ish am! Have you consulted with your primary doctor yet?

I do know that going a long time without restorative sleep makes me feel really wierd...

If you can't find a way to improve on your own, the best next step is probably to go to the doctor. I am sure you didn't want to hear that but it could be one of many things.

Medications can effect sleep even after you've been on them for awhile. You can have a rebound withdrawal effect from coming off medicines. The body changes and reacts differently as we age. You may have developed a new sleep problem!

I don't have any insights except to say I think you should not hesitate to complain loudly to your doctor!

Feel better soon, tearose

[MomtoGiuliana]

If these symptoms don't abate on their own in a short time, I would think it would warrant more investigation. For what it is worth, ALL of the symptoms you describe, even the sudden strange pain (except mine was in my lower back) I had when my POTS was severe. They eventually went away for me. They COULD all be explained by POTS, believe it or not. Unfortunately this condition waxes and wanes, often with no pattern or explanation. Do you have a POTS expert caring for you who can review these symptoms and your medications?

Katherine

[geneva]

Blackwolf, if there is one thing that I have learned since becoming ill that is that when YOU know something is different -- as in wrong, you need to investigate further. You had an x-ray but did they do lab work? Something could be off. I find that I get odd pains when I am mildly dehydrated -- which would seem impossible given the fluids I take in, but it does happen. Also electrolytes can get out of balance. Without restorative sleep I feel awful as well.

Trust yourself. This has been going on for several months now so perhaps a more complete checkup is needed. It may give you peace of mind.

[kristinp29]

I have had a constant pain in my neck and upper back that is TERRIBLE. I'm also nervous feeling, like waiting for something to happen.   This is new to me, this nervous feeling, I have never flet like this, except the first few months of being sick, and not knowing what was going on.

<{POST_SNAPBACK}>

I used to get that nervous feeling, too. It's scary, but nothing terrible ever happened, even though I really felt it would. The pain also sounds similar, though I'd get it in a bunch of different parts of my body. There wasn't a pattern or anything. Have you talked to your doctor about falling asleep during the day?

Love,

Kristin

[calypso]

I have had the waiting-for-something-to-happen bad feeling since the POTS began. It was much worse during my first seven or eight months of POTS but still is present to some degree. Now that it's been more than a year, I can safely say that I am still here and walking around. So you probably will be too.

I also feel something is terribly wrong, but so far nothing is. I don't mean to not take you seriously, I just don't know what could be wrong that could be picked up on any tests. You have had neurological eval before, right? I also have the drop-dead fatigue and am in a spell of it right now. It tends to come in spurts of a few weeks for me. I really feel some of it is mood-related -- when I'm depressed, it comes.

Hope things calm down for you soon and that at least you start feeling more relaxed.

Amy

[Ernie]

Hi,

I would try a sleep specialist or a pain specialist.

Ernie

[blackwolf]

Thanks all of you. Right now things are really getting tough, but I'll hang in. My Doc has basically blown my off, as "you just pulled something". and I have no specialist to work with. I had hoped to do some doc to doc work with my cardio doc and Dr Grubb, but with him being out of the office and so sick, he needs time to recover, I'm stuck on the hurry up and wait bus, again. As to pain and sleep specialists, the waiting lists are about 5 months out right now, I put in a back up " call for cancellations" type thing, but...

As to all of your other bits of advise, thank you, I think I'm just kind of holding on to the rim of that hole in the sidewalk again.

Some of the other POTS stuff is also getting alot worse. visually- I have flashing and shooting lights and light sensativity. My bladder is misbehaving too. I'm not really so depressed as frustrated. I have been doing so much better for so long now all these problems are getting worse and some new things too. Ok, Ok enough of the pity party.

Again, thank you all for the support.

Blackwolf

[MightyMouse]

Blackwolf, what area you in? Do you need a referral to see a specialist? Perhaps someone here can help you find a doctor who will see you sooner than in 5 months.

I only had to wait 2 weeks to get into my pain specialist...and when I went for my sleep study, I waited about a month. You really need to see someone if this is a new series of symptoms and if it's not gone away within a week or so (my doctor and I use a 4 day rule--he wants to see me if something is new or changes majorly and doesn't stop within 4 days).

Nina

[ginger]

Hi Blackwolf

Sorry you're feeling so rotten! I agree with everyone above to trust your instincts and keep after docs to be seen. Can you drive to another area/city that would have specialists who could see you sooner?

Definately sleep study sounds in order.

For your neck, could it be spondylosis or stenosis or herniation? Sometimes those conditions in the neck can even mess with bladder. What about one of the latest flu/viruses going around. Many I know have had terrible muscle/neck/back pain to the point of not being able to breath right, it hurts.

This isn't maybe the best advice and I wouldnt' generally recommend doing this, but my Chiropractor last year had trouble getting me to specialist right away and sent me to ER (she was very concerned)... that got the job done ASAP as the ER suspected cauda equina and/or herniation in lower back. Within minutes I had neurologist and neurosurgeon consults. My daughter's pediatrician also told me one time that if my daughter seemed like she had pneumonia again (as she did that visit), to just show up in their office and not to worry about what staff would say. Just get in there! SO, if you get really bad and can't get anyone to listen, maybe drastic measures would be in order.

Hope you can get treatment and relief soon!

Ginger

[Jersey Girl]

Hi Blackwolf, I have had light ( and noise) sensitivity and visual streaking and shooting pains in my head and stiff neck so severe I would just cry. I have had them since the start of my illness almost three years ago and they are ever so slowly fading although still very much present and can be frightening. If these are new symptoms I agree that you should have them checked out. I was also running to urinate all the time and still am somewhat. I was put on Neurontin for the headaches and stiff neck and am still taking it in small doses. I take 100 mg before I go to sleep and take it during the day as well to help me stay upright for longer periods of time. Hope you can get some relief. Martha

[blackwolf]

Dear Nina-thank you, I live in Sioux Falls SD(that's in the SE corner) and supposedly, we have wonderful specialists here, however most are so busy, that even doc refurals are long in coming. The closest POTS doc are the Mayo in Rochester MN, I heard there was one or two in the Twin Cities, But...

Per the pain specialist, they only like to give drugs to the very old, dying and the very sick, other wise "you need to learn to live with it" is the usuall responce. So I hang in and use meds when I can and excercise when I can, blah, blah, blah.... Here in SD the docs are still in the ice age, medically speaking, I shouldn't say that, I have had some wonderful docs here, mostly in small towns. I used to swim, but can't afford the club membership anymore.

Ginger-I would get a referal for a sleep study but my doc "doesn't think they tell you that much". I'm thinking of talking to a shrink to see if that gets me anywhere.

Dear Martha-I'm considering using the excuse of UTI to get in and get something done. If you know what I mean. (I know, that's just mean!)

Again, thank you all, I really need the help and support. I have been forced to concider a wheelchair to get around for any real length of time (SCARY to me)

Thanks Blackwolf

[MightyMouse]

Hi Blackwolf... sorry I couldn't be of more help and also saddened to hear that you pain management docs are still in the dark ages of "live with it." I have my pain management appointment tomorrow afternoon--I've seen him before and I know he wont say that to me, so that is such a weight off of me. Wish I could share him with you.

Nina

[blackwolf]

Nina- If I could afford the trip I would be there ssssssssooooooooo fast...

you are so sweet-if I could type more I would

bless you, blackwolf

nite, i'm off to the couch

[MightyMouse]

And I'd share my doctor with you if you came here-- He even gave me pain meds today that are in the narcotic realm--I didn't ask, but he suggested that I take oxycontin... told me that the percoset were basicly the baby asprin of pain meds. He said I needed something stronger, and felt I'll probably need to take it long term in order to continue working. I'm scheduled for cervical epidurals on 2/3, and left with an Rx for oxycontin.

I hope that your upcoming appointment comes sooner than you expected...and that you actually get help! Nina

Edited January 20, 2005 by MightyMouse

[ginger]

Hey Blackwolf, how about telling your doctor, "well, I don't think you tell me that much, either!"

Hope the laughter helps!

Ginger

[blackwolf]

Thanks Nina-Narc are rarely, if ever used only in hospitals and nursing homes "where the people really need it", Boy those docs make me sooo mad you are so always up beat, it is nice to hear someone is having good luck.

ginger- AMEN!

Again, thanks all. No luck on the doc front yet. May concider a trip to the ER if things don't settle down soon. But they are just about as bad as the GP office there.

Off to the couch. WAY to much pain.

Blackwolf

[calypso]

I don't know if you or Nina have taken Oxy before, but make sure you absolutely have no other choice before taking it. Although all narcotics are highly addictive, this one is known to really change people's personalities. I have two friends -- one who died recently, but had multiple health problems -- and another who has a weird virus that has affected his arms -- and both of these men had addiction problems with the drug. The one who died really didn't have a choice; he had broken multiple bones due to being on steroids for a transplant and had all kinds of problems. But he was very different during the last two years of his life, when he started this drug.

The other guy is a colleague, and he has almost been fired from his job for coming into work while "on" Oxy -- obviously he needs it -- but he is quite euphoric because of it, and our manager was not very happy with that.

Just thought I'd warn you, although I figure you guys are in so much pain, you have exhausted all other means of relief.

Amy

[blackwolf]

dear amy- i have tried every otc and script for daily pain relivers i can find(bextra, celebrix, etc.), either they didn't do anything, or they landed me in the er with allergic reactions of some kind or another-i can't even use stuff like benedryl (sp) without risks of complications yippeee

i can't use anything with tylenol in it either-most anything that ends in ..cet has tylenol, i can't use motrin or aleve either, and this last run on tramadol(ultram) 50mgsx2 twice a day didn't help. my doc thinks i need a phych eval before continuing tratment. whatever i just want some real help, like nina gets, lucky girl. sorry, that wasn't very nice.

right now i average about 3-5 hours sleep for every 25-30 hour up. i even tried a nasty high dose of sleep aid(doc said so) and i still only slept for a little while.

HHHEEELLLPPP!!!!!!!, i'm falling. say good nite gracy, nit gracy

blackwolf

[Guest tearose]

Wow, you're still waiting to deal with this?

By now I guess I'd drag my weary body to the ER and hang out there till someone did something!

You must be running yourself down blackwolf...

Who cares if they do whatever evaluations, when you hurt you hurt!

how much longer are you going to wait?

take care, tearose

[Guest Mary from OH]

Hey Blackwolf-

Have you ever tried meds in the benzo family? Like Klonopin or Zanaflex or Piroxicam? It might be worth a try! I'm not sure if you can tolerate them or not. All 3 of those aren't benzo's but would help with pain and sleep. Check it out!! I pray maybe one could help!! Klonopin is even good for POTS!!! A bonus!!!

I wish you luck!! No sleep and pain STINK!!! Have you even tried biofeedback? What about lavendar essential oils, etc? Can you play soft relaxing music and have a lavendar plug-in near your bed and use a lavendar pillow spray? It's very relaxing. I've used it for my daughter since she's been born. Because she's always had so much pain, she's always had difficulty sleeping. To this day, we still do the same routine. I enjoy the products from Bath and Body works. Their Lavendar and Vanilla is our favorite. If you don't have one near you, I'd be happy to send you some!

Take care and GET SOME SLEEP!!!

[blackwolf]

tearose-i just keep plugging on. my aunt just passed away Wed. nite around midnite, lost to the big C. it was the 3rd time around so... she was happilly drugged on morphin drip and slept right away. so i have spent the last few nites in a recliner, not so bad for me. anyway, the er here is my last resort, and i'm not colapsing every few hours yet, so i'll hang on. i did get an appointment for tomarrow at 11:30, but, i don't trust my doc any farther than i can through him. he tried, again, to put me on some no-no drugs. the reason i can't change is the i receive medicaid and can only change once a year, if i move, or the doc refuses to treat me.

mary-benzos and the others you mentioned are usually only given out by phych docs. i want klonopin, but rarely do i get the meds i would really like to try as they are"unproven and unknown". here in the "outback" of the us we are so far behind. my cardio doc wants to send me back to the mayo in mn, but there is no way i can handle a trip there now, i can hardly go across town. per the biofeedback, been doing it for years, but i am so tired that it just helps me relax, tho it can be enough just to do that. and bb works is one of my favorite places-vanilla jasmine, vanilla lavendar, sweet pea, vanilla, moonlight paths and one other one are my usual buys. my mom just got me some for my bday(early present, i'm a feb 12th kid) and i love to listen to enya, or the nature tracks are good to, native songs and music types are my favs.

anyway, thanks all, i'll be around some yet tonite and i'll check in later(3-4am) for any and all suggestions. personally, i'm starting to lean towards a large 2x4, mabey a small sledge?

blackwolf

[blackwolf]

lordy, if it rains, it poors.

my aunty dee ( my fav) passed away wed nite. this really *****!!!!!

i'm going to lay on the couch and see if i can hold it down for awhile.

mabey i'll be blessed with sleep, of course, now i'm afraid to go to sleep, for i might miss the doc apt. later on.

oh well, nite all.

enough of the whining.

blackwolf

[Ernie]

Hi Blackwolf,

I am sorry for the loss of your dear aunt. Take the time you need to mourn your loss.

I hope you managed to sleep and that you have a good doctor's appointment.

Ernie

[blackwolf]

thanks ernie- yes, thanks to a new drug, and only a little reaction i got some sleep, about 10 hours. still in terrible pain.

i got a refural for a rheum. doc, for 6 weeks out, pending my liver enzymes aren't to high again. they are going up and i had to have them tested again friday.

i also have to see my cardio again. my heart is dropping down to the 30s again while resting and staying low till i get up and whoosh-up they go to about 180. i'm on norpace 150mgsx2 and toprol 50mgs every day. i have suddenly devopeped an intolerance for my proamatine, i take it and i get the worst chest pains i have had for years.

a fainting we will go

a fainting we will go....

i read alot of post, but just can't respond today-this is enough for me

nite all

blackwolf