Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group i feel like i'm going crazy.......but i'm not!

hi donette,

BP a good thing to mention, but no, that's ok.

when i started waking up like that, the first thing i did was check my pulse. nope, that was fine. then i checked my BP, we have a monitor at home. nope, that was fine too. so my heart isn't racing, and my BP isn't going up, rather my heart is pounding like when one is nervous or scared, even if i'm not. its the oddest sensation.

i go to so many doctors, i think my BP is checked like every month, at the doctors its either normal or borderline high, seems to fluctuate so much there, but here its always low or normal. and i've taken the monitor in to the doctors to do a comparison there, so we know our monitor is good.

last year when this was so bad, the doctors and i really thought it was soft tissue in the rhomboid area, but just to make sure it wasn't spinal, i did have an MRI of my C-spine and T-spine. i do have some disc damage in both regions, interestingly exactly where it hurts at times, but we all agreed that the severe pain really wasn't coming from those locations, though they cause issues of their own.

they did have me try lyrica as well in case any of my pain was nerve related, but that did nothing for the pain, all it did was give me a splitting migraine, all day every day til i went off it, then phew! headache gone.

and don't worry about the suggesting of herbs. i'm always shouting the praises of the things i've found helpful. i mean we suffer for so long sometimes and then when we find something that helps, we just want to shout it from the roof tops! want everyone to experience what we have, even if it might not work for everyone, we're just so excited, we can't help ourselves.

so, with that said. i like herbs. ginger and peppermint are a big part of my stomach therapy. yes, i take prilosec at night before bed, and occasionally mylanta as needed, but ginger and mint are really helpful for gastritis (and i can do mint because i don't have reflux).

as for the valerian. i have valerian root tea in my cupboard. the stuff tastes nasty! very medicinal tasting, but mixed with mint and honey, its not so bad. i do take it when i feel like i need it. i first bought it when i was having serious gastritis issues. didn't realize how powerful it would be, thought it would be more like chamomile, which i find very mild. went to the herb store, came home, made myself a cup of tea in the middle of the afternoon, then proceeded to zonk out in the recliner for three hours straight. so i use it when i need it. i agree, its a nice natural sedative.

thanks tracey,

its so nice to see so many people who understand! with a title like i put down, i really set myself up for some great jokes, but everyone has been so thoughtful

when we are in so much pain and feel so all alone with it, it is so nice to come here and not feel so all alone with it.

actually just last night, i found your links to these things in another post, so i clicked on them and listened.

oddly, i found the alpha waves very irritating and could feel my heart going faster. then i tried the theta waves and they were much more soothing. so then i remembered liking the sounds of the tibetan singing bowls i had seen in a store a few weeks back so searched those on youtube and listened for awhile. then decided to buy a meditation album (Tibetan Chakra Meditations) with those singing bowl sounds that i like so much.

so now i am nice and relaxed........and in pain! LOL! but at least i'm relaxed!

thanks so much for introducing me to these things

thanks steve, the pool's not an option for me right now, but walking does give me relief. just can't walk 20 miles to work, LOL! and kinda have to sit for my job. told my husband if i just didn't have to sit and lay (wish i could sleep standing up like a horse) i'd be ok. so yes, exercise does help.

sorry to hear that you've had similar symptoms. let me know if the doctors suggest anything new to you.

as for the stomach, for what its worth, good or bad, i have a lot of experience controlling gastritis, 90% of the time i win. even last fall when things went terribly downhill painwise, and even stomach and bowel wise, i was able to prevent an ulcer through taking my priloec, taking mylanta at bedtime and if i woke in the early morning, eating right before bed (thankfully i don't have reflux/GERD), and using psyllium. but i too lost almost 10 lbs in a month when things were really bad, i wasn't digesting my food properly. whenever my gastritis flares, my small intestine flares as well. but i got it under control.

hope you don't have an ulcer, just a bit of gastritis, that too can be very painful, but a lot less serious.

but i do find when the stomach is brought back around, the bowels follow along without any treatment other than healing the stomach.

good luck to you, and let me know what the doctors have to say.

OK now,
the tranquilizer pills are called "valmane" and they are an extract of valerian. As john said valerian is a natural herb so no prescription needed.
For the vertigo thing i also take "Vertigo-Vomex" and "Antivom".These meds seem to help quite a lot when things go bad. Please ask your doctor if he can find the substances so that you can find the meds provided in your area probably with different names.
For the long-run i use a B1+B6+B12 vitamin complex which is supposed to help the nerves recover after a trauma.

Hope that helps.

thanks so much!

i see that you are from greece. not sure if we can get valerian in capsules here, but i make a mean cup of valerian root tea! it smells so medicinal that my hubby won't come near me when i drink it, but i haven't had it for some time. i will try that. i don't know if its as strong as the pills, but it does knock me out, so it must be pretty strong.

or maybe they do sell pills here in the U.S.

i don't have any vertigo with it, thank goodness, that sounds awful.

the vitamin pills never did much for me except upset my tummy. but i'm really good with my diet. and i eat total cereal every day.

thans so so much for getting back to me!

PS oops! looks like i can get valerian root in pill form. thanks!

I think my point is getting lost in the sauce here

stating it as simply as possible:

the mind is part of the equation, it is an essential part of the LOOP, there literally is no pain without the brain's involvement

not disagreeing with that, just not seeing that my mind is causing more pain, but rather than debating it, i'll wait to read the book, try the techniques, reserve final judgement til then.

a lot of folk tell me my illness is in my mind, I say no its not in my mind, but it is in my nervous system

My mind is fine. In fact looking at a lot of other folk I would say my mind is perfect LOL

No seriously, my mind is perfectly sane, yep i mess up, get muddles thinking, anxiety, even depression sometimes but none of this is causing my illness. My illness is physical. It is physical if i have been diagnosed or not

But, and I know this for a fact, my nervous system is hyper alert

I have lived with a debilitating condition for 20 years. This illness has dictated every moment of my life, where i can work, who i can live with, what i can eat, how i will sleep, on and on this list goes

This illness is more demanding than a crying baby, is there any wonder i get worn out, both physically and mentally

And with all the clap trap i get told by doctors is there any wonder I get nervous, even crazy sometimes

but i am not crazy. what it is is all my body is affected by this illness and my nervous system is no exception.

Like the rest of me there are so many times my nervous system has to work hard. It has so much to cope with, roudy people, noisy tv, flashing lights, fast pace people, weather changes, etc. Trying to cope with every day demands when your pelvis feels like it is caving in is too much for my nervous system, it is too much for anybodies nervous system

Anyway, what I have learned is this, I am me, illness, misdiagnosis and all, it is all part of me and I have to live with it. At first this used to send me mental. why should i have to live with this, I would yell, but no matter how much I lost my temper, I still had it all


anyway, as the years have passed I have learned how to quieten my life. I have learned how to make my life with all its crippling pain, other peoples cruelty, lack of money, accusations of being mental, I have learned to create a spiritual life, simply just for me.

I have surrounded myself with nature, music, art ,comedy, films with happy endings, good food ,good company and so on.

Now even though i still have my illness and even though my illness is progressing I feel better than ever have and my nervous system, God bless it, is finally responding normally

even when the pain feels like i am giving birth, my nervous system can stay calm. It is hard to say exactly how I have achieved this, I will as I think of things share more, but basically my nervous system feels loved, and reassured so even when some kind of stimuli, even pain triggers it, some how it is not firing up like it used to, and I no longer have to experience the feelings of dread and helplessness like i used to do

Now, this did not come over night, and there are days when i come close, especially when there are crazy folk about telling me my illness is all in my head. Straight up, nobody can trigger my nervous syatem like these folk can. But even these folk are loosing their grip on me

I can see now that there are folk that are on my side and there are folk that are not. These folk may sound like they are saying the same thing but they are not. It took me a while to spot the difference, but now i see. If somebody is or has suffered on the level i have and they speak in a loving tone to me and they say something like, I can help you, it is with sincerety that i speak, i realise that these are not using phsychological babble to put me down but really are able to teach me something new

I now love and care for myself in such a gentle way, the same way as when folk care for young children, I now do not need any medication. this is after years of taking God knows what, and my illness was not as advanced as it is now

We all have as much right to health and vitality as anybody else

All my love Joanne