dreading another sleepless nite

[blackwolf]

I know I have been writing about this for awhile now, but I just can't stop this "crash". I see my cardio tomarrow (ok today). But I still wonder if I will make it that far. I'm on the verg of blacking out and every time I move my heart goes nuts(palps and tachy). I'm cold, tired and in tons of pain, mostly chest wall, all the way around. I haven't been like this before and I don't like it. I am terrible dizzy and lightheaded. I'm drinking like normal, even added more salt. Can't hardly eat either, just want to if you get my drift. The pills for that aren't working. It's like my toprol isn't even in my system. Even called to be sure there wasn't a recall or something. I'm weak and shaky, no sign of infection had that checked last week. Just fried, I'm afraid I'll be in a wheelchair by the end of the week

I want to just go to sleep but all I do is just stare at the ceiling and wait. This will be the 6th nite I've had trouble, I'm averaging about 4 hours a nite(normal is about 10).

Thank you for the vent fest.

hangn' in, hangn' on, hangn' out, the window that is

Blackwolf

I think I'm going to have a "break down" soon!

[JLB]

Gosh, I'm sorry to read this. I hate this kind of thing. How long has it been going on?

I don't know if/how this would apply to your situation, but the worst crash I've had to date - it was a lot like what you're describing - lasted a couple of weeks (3?), and I really believe it was as horrible as it was because of the med I was taking (Lopressor). I stopped taking it, and after a few days felt much better. You mentioned the medication you're on, and although I don't know anything about it, I was just wondering of you're one of those like me, who can't take anything because of the way it will impact the ANS.

I'll be looking for your update about your appointment today. My prayers go with you.

JB

[geneva]

BW, so sorry to hear you are in a down cycle. I couldn't sleep last night either so I should have logged on.

I don't know why this crash is so much worse for you but I have felt the way you descrbe before and it is miserable. Also, I can tell you that if I do not get a good night sleep my symptoms are 10 times worse the next day. Today, I feel lousy and my GI tract is really bad and I don't want to eat either. I don't like to take meds to help me sleep but I have set a rule that if I go 2 nights in a row with very little or no sleep, I take something the next night. It is AMAZING how much better I feel when I have a restful night sleep (8 to 10 hours). I can't imagine how I would feel with 6 nights in a row of little quality sleep.

I hope your dr appt today can shed some light on what is going on. Feel better!

[Ernie]

Could you take some sleeping pills?

Good luck with your appointment.

Ernie

[calypso]

I am usually against sleeping pills or tranquilizers, but I think one is in order for you to sleep. Just make sure someone else is there to watch your kids -- if I remember correctly, you have a young child at home.

I am sending healing energy your way! Hope your appointment goes well and the doc is able to figure out what's making you crash.

Amy

[MomtoGiuliana]

I know I have been on that awful downward spiral, and I have also been on that cycle of little to no sleep night after night due to insomnia.

I agree about the sleeping pills--if you can possibly try to do it and can block out a good 8-10 hours. It helps the body and mind so much to be rested. You might only need to do it for a couple of nights to get your sleep cycle back on track.

I find it helps to take a cool bath or shower before trying to go to sleep at night, if I am having trouble sleeping.

Let us know how the appt went.

Katherine

[Gena]

Blackwolf,

When I first started having full blown POTs symptoms in June of this year, I felt exactly like you. I couldn't sleep, i couldn't even roll over in bed without sending my heart into a tail spin! I was tired and wired at the same time. I was afraid if I took a sleeping pill that I wouldn't wake up. I dreaded nightfall because I knew I'd be a wreck the next day. But alas I finally got up the nerve to take some Valerian and it really did help me get a few good nights of sleep. Being able to sleep made me feel much better the next day, although far from 100%. At least I was able to function better. During the first 2 months, my symptoms remained pretty bad and I had to have my husband push me in a wheel chair to the bathroom in the middle of the night. It was absolutely awful. I tried a calcium channel blocker for the tachycardia but couldn't stay on it b/c my BP got too low. Anway, I started pumping fluids, salt, gatorade, meditating and taking a lot of licorice root and ashwagandha (indian herb). Miraculously my symptoms got better. I don't know that I can attribute it to any one specific thing. I still deal with POTS symptoms, but nothing at all like they were just a few months ago. I guess I just want you to know that there a light at the the end of the tunnel even in our darkest moments. I will keep you in my prayers for a speedy recovery.

[ethansmom]

Sorry to hear how you've been feeling. I go through cycles where I have a lot of problems sleeping as well- and I finally had to resort to taking something to help. When I am going through this, I will take a Tylenol PM (not the best choice, but I've never actually invested in sleeping pills for the same reasons listed above)- not two pills but just ONE- once or twice during that week. At least that way you get some rest and not zero. I also feel horrible when I don't sleep, or if I get off my sleep schedule.

Some things that have helped me immensly are as follows:

Trying NOT to take naps (if I do nap, I make it 30 minutes of rest only).

Going to bed and waking up at the same time each day

Allowing the bed to be for sleep and sex only-NO TV and NO reading (a doctor told me this and I realized that watching TV for an hour each evening in my bed was indeed causing me to have trouble falling asleep and staying that way).

Drink a cup of Chamomile tea before bed, and try as hard as you can NOT to allow the insomnia to take over your thoughts- which is the hardest part- I get so angry with myself when I can't fall alseep that it gets me all riled up. I;ve sort of adopted a "take it or leave it" talk with myself- where I have to ralize that if I let it go, sleep will come evetually. If I get all worked up about it, then I am just stressing myself more and decreasing the likelihood of getting any rest.

It also wouldn't hurt at all to take a look at your medication regimen and be sure tha tyou haven't changed or added anything that might be affecting your ability to relax and exacerbating your POTS symptoms. I hope this passes for you soon!!

[Guest GayleP]

Sorry you are having so much trouble sleeping. I find a lack of sleep can make symptoms worse and you can get into kind of a bad cycle.

Hope your appointment goes OK. You might want to try to take soemthing to help with sleep just to get back on track.

GayleP

[MightyMouse]

Any answers from your doc? When my sleeping is a problem, I use ambien. Also, my doc gave me xanax to take when my tachy wont slow down on it's own, but I don't like to use it because it leaves me feeling hungover for at least a day from even a half a dose.

Nina

[Herdswoman]

Good advice, Jessica. I too, have the bad habit of TV in bed. And napping.

One easy thing that does help me with insomnia is Tylenol PM.....just plain ol' acetominophen with a benadryl kicker. Night, night.

[Nicole's Mom]

Blackwolf,

I'm so sorry that you have been having such a rough time along with the sleep problem. Nicole has had her share of sleep problems, especially recently since she hasn't been doing well and I know how icky she feels when she sleeps poorly. For her this seems to go hand in hand with losing her appetite as well (plus other problems).

About Valerian: Some people do fine with it and get good results. However I might add that if you search the herb books you will find a warning that some people have the opposite effect from Valerian. In fact I know of three people who had the opposite reaction to Valerian. Each was snapped awake just about 2 hours into sleep with high anxiety. (I am one of the three, Nicole is another, and a male friend of the family is the third).

Having said that about Valerian I will add (with a bit of hesitancy- because of the Valerian experieces) there are other herbs (you can get these in tincture form) that are known to relax the body and help with sleep. I have not heard of anyone experiencing the Valerian thing with these but as you know everyone is different and everyone reacts differently to different drugs or herbs or what have you. So one never knows. If you decide to try any of them you might want to really read up on them. The relaxing/ sleeping herbs are:

Passionflower

Hops

Kava (not too high a dose and never with wine or liquor of any sort)

Skullcap

Since herbs can be powerful and it's always best to be cautious anyone who is overly-sensitive to meds should take only take a smidge at first to test it out (just maybe 1-2 drops of the tincture in a small amount of water instead of the recommended 20-30 drops). Another thing is to take that smidge in the middle of the day instead of at bedtime just in case the opposite effect thing

occurs - then you won't kept awake.

Take care-hope things start turning in a better direction for you really soon.

Beverly

[EarthMother]

Gentle hugs your way Blackwolf. I wish I knew more about why the bad crashes occur ... what to do to prevent them ... or what helps during the worst of the bad times. For myself it seems like each time was unique. What worked once, didn't work at all and my hope diminished with each battle.

What I find most difficult is to "trust" my body's wisdom. How can we trust a body that is seems to defy our most basic needs? But trust and acceptance of what is seems to be the only thing we can do. Our bodies are trying their best to heal ... it may not seem that way. We may feel that the only way we will recover is to find an answer or a solution. And when we do that's great. But if we don't ... we need to keep in mind that the body has an ageless wisdom and it can find a way to heal, on it's own if we give it the time, love and patience it needs.

For me, when I find I am in an abnormal sleep cycle, I try to just go with the flow. I nap when I can throughout a 24 hour clock instead of the traditional -- night time sleep pattern. And when I can't sleep at all, I try to meditate. Just focus on my breathing and let my mind become quiet and still. Studies suggest that we can achieve the same benifits from mindful meditation as we would through a good nights sleep. Don't know if I believe this or not, but it feels good to consider this when it is 3 in the morning and I am lying in bed wide awake, in pain or panic.

I hope you find a comfortable place soon to rest as you move through your healing journey.

EM

[blackwolf]

Thank you all!!

My cardio had an emergency and couldn't see me today, I see him tomarrow at 9:30 am. His words " no matter what" Man I like him, At least he trys.

Beverly- I'll still ask about the alternatives for florinef. As to herbs,I have tried about 10 different kinds of sleep aids, no luck yet(either nothing happens or I'm wired).

Everyone else- I'm trying sleep aids now. My kids are 7 and 10 and my hubby is here 24/7 too(thank goodness). Ambian, Amitriptylline, and most OTC sleep aids or no-nos as I cannot tolerate antihistamine/decogestants as they push my hr to dangerous levels(220 last time). And no more tylenol(acetominophen) gives me nasty "rebound headaches" even after one dose.

Nina- I would love to try Xanax or something to try to help. My cardio isn't a big believer in that kind of stuff. Heck, I'ld even try O2 if it would help.

Earthmother- normally, I just "roll woth the punches" however, with my brother's case going to court over the next few days I need to to up during the day( Tues and Wed am). I have on more than one occasion rotated thru the day to get my sleep pattern back to normal.

I'm still hangn' in.

Thank again soooooo much!!!!

I'm so glad most everyone understands!

Blackwolf

[Merrill]

Blackwolf, my heart goes out to you too tonight! What an awful stretch you're in--and I just read about your brother's court dates. The stress you're under now has got to be among the highest stress periods you've ever experienced...yes? I mean--that would cause anyone sleepless nights, and if you can't take any meds -- I'll groan with you... I was going to suggest ambien, which works for me. You should talk to your neurologist about other sleep aids that don't work the way you describe; there are so many products out there. Anyway, given all that stress, it's not surprising your symptoms are flaring. Just try to find some way to give yourself a little peaceful space each day ... where you can surround yourself with something pleasing to your senses. And like I said to Emily, WAIT. Things will change, and I pray it's all for the better. Take care,

Merrill

[blackwolf]

thanks Merrill, I'm hoping the nite will pass well. I did take one of my WOW! pain killers, they do make me sleepy (I hope it works). I've just run out of stuff to try. I'm off to "bed". For those of you who don't know my bed is my couch. I can only lay in about 3 positions at about a 75% level right now. I'm terrilbly short of breath, I use a fan to force air in my face all nite, Burrrrrr, thank goodness for electric blankets. And for those of you who don't sleep with the tv on, I can't seem to sleep without it. I just put in a dvd and, normally I'm off to sleep, not lately though. If I wake up in a to dark of room, I feel lost and have no sense of balance, I can't walk a strainght line, like I can regularly Ha Ha (ok not funny, bad girl) . At least I still have my sense of humor.

For those of you with pets- does anyone have a "sensitive pet". My dog (minature poodle) follows me everywhere like a lost puppy. He lays with me, sleeps with me(on my feet or on the floor at my feet). This has only started in the last few weeks I have started this nasty crash. He seems like he is waiting for his "good dog " cookie after his bath or something. He jumps every time I move. I love him and my cat too, without them I would have gone nuts long ago.

OK, OK shutting up and going to bed.

Blackwolf

[blackwolf]

2:05 am central and still awake.

I was reading thru all the posts again, I feel a little better with all you out there.

JLB- I have checked and rechecked my daily notes, I haven't changed anything but stopping the theophylline. I didn't notice any real big change after stopping and the pharm. said it would be out of my system in about a week at the most. As to the Toprol XL, it is a beta blocker and I have been on it for about a year and a half I think. The room is hazy, oh wait, that's just the brain fog. I think I'll go try looking at the ceiling again. The kids get up for school in about 4 hours, they had a four day weekend. I'm teaching my daughter to do cross stitch. My mom found a little baby bib with a printed pattern to do. She loves it. I think I'll start some seeds in the morning, I'm hungry for some radishes, how about leaf lettuce, pansies anyone?. They just love my south facing window and cool house.

Oh boy, I'm way out in the field. Got to go.

Blackwolf

[corina]

Hi blackwolf,

hope you are ready for your appointment with your cardio today, saw you had a tough night again. I'm glad you didn't loose your sense of humor. Wish you luck on your appointment (maybe raising your beta blockers could help you. I'm on a 300 mg dose of metoprolol which works for 24 hours a day and it definately helps me (although I really don't understand why but why should I bother ).

Corina

BTW I don't advise you to raise on your BB's, just maybe you can talk this over with your cardio (what helps for me could be a danger to you, as you know we're all different).

[JLB]

Blackwolf, I read in one of the posts that your brother is having some troubles? Do you think any of this is stress-related? If so, I really think your dr should consider giving you Xanax or something like it, even if only for episodic use.

[geneva]

Ph, Blackwolf, I am really sorry that you had another bad night. Last night I took 1/2 pill of Ativan and can say I feel much better after not sleeping the night before. I know you talk about some drugs not helping you sleep. My experience with Ativan is that I should NOT take it until I am ready to jump in bed and be still for the night. There is a window of time in which it will aid me sleeping. If I get back out of bed, do something I forgot, I may miss the window and find I still get insomnia. Don't know why that is but it just is.

I am not saying Ativan or Xanax are the answer for you but your doctors MUST help you or you will continue to stay in this Potshole and get worse.

As for dogs, yes they have a very keen sense. WHen I first became ill, I stayed with neighbors and from the first night their dog came and sleep IN the bed with me and would never leave my side day or night and she always seemed so serious like she knew she had a job to do -watching over me. 6 weeks later when I finally had some improvement she sensed it and went about the house more freely!! I learned that the dog had never been allowed to sleep on beds before I arrived and that when I was asleep the owners would drag her out of the room and close the door but she refused to budge from the door!! It is just remarkable what they know and what would we do without them?

Let us know how your appointment goes today.

[blackwolf]

I'm back on norpace, 150 mgs twice a day. I hope it helps. I have to have aliver panel run every month to be sure it is ok. Today at my appt. my cardio was floored that my bp was 72/54 and I was still moving. My hr was about 120. He still doesn't feel very good about getting into the other drugs, but suggested I try again to get something like Xanax or such from my gp.

Geneva- If only I were so lucky, it is a constant struggle to get help from my gp. I'm switching again. Ativan at 45 mgs was uneffective. I'm going to give in and try another dose of Amitriptalline (sp?) to try to sleep, I don't care for the side effects but I have to sleep.

My cardio also suggested trying a drink, wine or wine coolers. I am one of the few hear who seems to handle a drink once in awhile. I picked some up today, Bartles and James fuzzy navels ( or as my gramdmother said "linty belly button") YUM!

Again, I thank each and everyone of you for all of your support thru this!!! I will write again tomarrow to let you know if it helped, I have to get off soon. My internet supplier is making changes and said the internet would be done starting about 11pm.

Thank you all!!!!!!!!!

Blackwolf

[MightyMouse]

Good luck tonight! I hope it's "sweet dreams" for you, and not counting sheep.

Nina

[blackwolf]

Thanks Nina, it was, I got about 10 hours sleep, but I still had a lot of trouble getting to sleep. Though I still wish I didn't have to take them. It makes me feel like I have a terrible hang over. And yes, I took alot, 45 mgs, still very safe range. I know a friend of my hubby that takes about 100mgs every nite to sleep.

Someone wrote earlier about stress being a factor in all of this, YES IT IS. My brother pleaded guilty to all the charges and is scheduled to be senticed on Nov. 29th. Minamin sentence is 165 years. Most child porn/molestation cases spend 35 to 40 years in prision. My brother will most likely die in there before he is eligable for parole. We also have one more thing to do at his house, take the stuff that didn't get sold to one of the charaties here in town. At least something will come out of this. My daughter is doing well in therapy as are the rest of us. I have basicly washed my hands of him and have already began to move on. My hubby is still having alot of trouble, but he has a bad history and I feel it will take a while longer to snape back. My folks seem to be having a bad time to, at least my mom and I have a good relationship. We have talked, cried, laughed and whatever works.

Thank you all for all of your support and good thoughts.

Blackwolf

[Ernie]

Hi Blackwolf,

I am so sorry for the events (I don't really know what word to put!) that you have in your life. I just wish I had a magic stick to help you.

I will keep praying for you so that you will be able to pull out of all of this.

Ernie

[geneva]

BW, it sounds like the stress you have been under would topple anyone and yet you have been hanging on to get to closure. Now it is time to focus on you and getting yourself better -- at least back to baseline. A few more nights of sound 10 hours sleep may help you tremendously and I truly wish that for you.

Sleep well and know there are many positive thoughts being sent your way.