Hi everyone, I am new to the boards but not to the symptoms. I posted in the anxety site first because that is a major problem for me. I repeat that I have every symptom on this board and many more, to boot, I am only 35 and have had it neraly 3 years. The neuros, md's etc all say I'm normal but what is normal? Living life in a mysery every day for years dosn't seem normal to me.

I started with the internal shaking a few years ago, I noticed it mostly when I would come off of midnight shift and try to lay down, my whole body felt like it was plugged in to something. I chalked it up to having worked the graveyard shift and fell asleep and it would be gone when I woke up. Jump to today and it is there most days when I wake up, every night when I go to sleep, like I am falling in bed, my body feels like it is motorized. I also suffer from the inability to tolerate motion of any kind. Mostly the type like getting out of a moving car, the ground feels like it is undulating beneath me, getting off an elevator, it feel like I am going up and down etc. I can feel this also at any time throughout the day but notice it alot if I am in fluorescent lighting, and unfortunatley I work in a hospital so guess what? All fluorescent lighting there so I am pretty bad most days. Its a wonder I haven't been questioned if I am drunk or something! lol. Anyway, I have had every test, all inner ear check out ok, was diagnosed by a world renowned neruootologist in Pittsburgh with a condition called MAV, migraine associated vertigo, I am skeptical to believe it but on the flip side at least its a name for it all. I have major visual disturbances, tight neck, back of head feels llike its pulsing or something, There is truly never a day that goes by that I dont feel this way. I hve tried many meds but guess what? My body hates meds and I get terribly sick from anything they try.

I had my hormones checked twice, normal, big suprise huh? Its the only explanation I have for all of this stuff. My face feels weird, tingly, tight, like the skin is burned and I also get a sudden tingling over the back of my skull into the face sometimes. I jitter, shake, feel weak in the limbs at times. These symptoms really increase during high stress times, at I noticed it specifically bad during my mothers funeral 2 years ago when I thought I was coping pretty good but I couldn't talk right and my thumbs turned in and I couldn't uncurl them!!! That lasted a good couple hours but I chalked it up to the anquish I was going through.

I have heat intolerance, feel freezing in the feet and hands, thyroid is normal for the 50th time it has been checked, light sensitivity big time, wear sunglasses all the time, get flashes in vision, blurry, feel like I am not seeing right, eye doctor, everythings normal. Xanax helps this, so I know it is an anxiety issue but for 3 years straight????? On vacations, days off, happy times I have all of this. Its a real downer, my husband is not understanding of it because I "look totally normal". HELP PLEASE. I know you all have these crazy things but what is the story with the normal hormones and these symptoms????? I get headaches, off balance most of the time, have started being afraid to go most places, dont enjoy anything anymore as I feel like am I going to be like this forever??? I am sure it is a disease they haven't found yet, despite having every test under the sun. MRI, blood work, ekgs you name it. I am terrified to get my period which by the way is coming every 23-24 days when it was 28 days my entire life, the cramps, clots, pain and optical migraines are too much to bear, gyne exam last week normal. Any support would be appreciated, I really love this site and respect what all of you have to say and sympathise with each and every one of you and your private journeys through the this mysery. I try to tell myself look at children afflicted with horrible illnesses, what did they do to deserve any of it? NOTHING, I know there are worse things to have and am grateful so far (fingers crossed) it is nothing worse than hormones but am skeptical as to whether this is really the case.

In sympathy and respect,
Kim

Hi Kim

I have read your posts - you are really having a tough time - I am so sorry for you

OK - some of my hormone tests have come back normal - and some way off - so hormones tests are not super reliable - hormones are pulsatile and if you are in early peri - the your hormones could be fluctuating in the day by the hour....

The anxiety is crushing isnt it - just feels like there is no escape - I do believe it is grounded in our hormones (otherwise there would be no such thing as PMT!!!) - I also think our minds make it much worse - when our hormones make our bodies feel like they are stressed - then our minds say' Hey I feel stressed so I must be stressed' and this makes it worse and then you get fearful of it and the whole blasted negative viscous cycle is set up

I am still AMAZED that Drs tell me I am fine but I feel absolutely crushingly tired and weird - like you say - plugged in - they have NO IDEA what this feels like. If peri was a male issue you can bet there would be a lot more research and sympathy out there!!!!

I do get the internal shaking - my 'motor' mostly behind my rib cage or in my head for me - like I am wired - I cant sleep and get starts and jerks. I have had the visual disturbances and vertigo - also been to ENT - he WONT link it to peri and i have tried and tried to get him to take the whole of me into account - but ENT just like heads dont they - not bodies!!!

Have you had adrenals checked? I have had thyroid etc but dont think adrenals were....

OK - you have got through 3 years of this and been tested by the Drs tons of times - and they have found nothing - this is what I had to say to myself - as rough as I feel - I am not going to die - I had to accept that this was natural - and it will pass - please let that be soon. But it is no way to live if you feel as you do. Are you on any form of BCP? Do you exercise - eat well - relax?

The only way I am getting through day to day at the moment is with frineds on PS who understand how crap this journey is - I do not compare myslef to them or anyone else anymore. I take comfort in the fact that I feel exactly the same as they do - they have the same sensations as me - and I thought I was mad and imagining them!!!

If you have had all the tests - accept that you dont have a mystery disease - I thought I had too - you are not going to die - there is nothing to be frightened off - just life to be lived - OK it is not FUN at the moment - this is it - life is tough

I know what you say about looking normal - I look slim, fit and healthy - if only peri gave me green zits all over my face I could say 'Hey LOOK see - I am ill!!!!!' BUT not I look great but I FEEL knackered and crap - I dont show lack of sleep in my face (big bags under my eyes woudl help!!!!) and I am slim and look young - ergo everyone says how well I look - now I accept that as I compliment and think - yes I do look good - BUT I am not sleeping and I am very very tired and my guts are often knotted inside.....

It is hormones - go on say it - it is hormones........and it will pass......

Pants to peri!!!

I so feel for you and I send you big hugs from UK

Mele

Kim,

While you are a bit younger than most many of your symptoms do sound hormonal. I personally did not recognize that I was in peri until Feb. of last year (at 46), but in retrospect I think I had experienced some hormonal issues in my mid 30's that were never diagnosed (blamed on poor posture..stress...etc). Given that all of the test you have had have came back normal and the change in your cycle I think it might be likely that you are experiencing some early fluctuations.

I have experienced all of the symptoms you have mentioned with the exception of the motion sickness, light sensitivity and issue with flourescent lighting. I have heard other women and seen it documented that vertigo can be hormonal...and I personally experience sensitivity to sounds. I wish I could give you answers...but the only thing I can recommend is to continue to check your health as you see fit. If testing continues to come back negative feel reassured and try hard to relax..which is almost impossible (I know).

Regardless of whether this is truly hormonal or not rely on your faith to help you through and use this site and the wonderful friends for support. My family is understanding but they really can't relate because I too look just fine, and I think it's hard for anyone to understand unless they have been there. The ladies here on PS can all relate to feeling miserable and anxious.

Take it a day at a time...a minute at a time...and try to enjoy today and not worry about tomorrow.

TeeJay

Hi Mele,

YOu are so right in all that you say. I too know that I would most likely be dead by now if it was a terminal thing, I think its just that how could this continually be happening and not be causing damage some way to us? Thats what my fear is the most because when it all started it was milder and now it is full blown and I think, well, this has to be doing something, I sit around and wait for a stroke, isnt that awful? I know it is and chastise myself for being so self centered that I think of that all the time. I need a shrink, seriuosly, to talk all of these crazy feelings through with someone. I cant even talk on the phone for any length of time because I start to feel whacko, I envy people their good health and I should be happy for them and be glad they aren't experiencing anything so horrible. I am pretty sedentary, no real exercise routine because of the off balance feeling with any major movement, eat crappy pretty much, sometimes I dont even eat as I am nauseated most of the time, so no, I guess I haven't been too proactive in my health which is a shame, I know if I dont do something for myself then how am I to get better. I hve cut caffeine, alcohol, and msg, sweetneners out as I know they are neurotoxic but to no avail. I am on a pity party that I am the only guest and I was always such a self assured person. I really need to get over myself, Its a hard hurdle to make. Thanks so much though, all of you people are great.

Hi

Your body is building and reparing and destroying itself all the time - so it can heal - the body is an amzing thing - if you give it the tools - it aims to heal itself

Nothing will cure you overnight - well I guess some things might but they will have nasty side effects!!!!

Eat well - fruit and veg and good supplements
Exercise - start with walking - or something you like - walking is great cos it involves fresh air and sites and sounds which stimulate that tired narrow focused mind
Aerobic exercise - and yes your body can take it cos mine does!!! - is a great way to burn off the adrenaline and get some endorphins into your system - or as Tinkybug calls them Dolphins - I think that is nice and I always think of her when I go out exercising now - and all my dolphins being released!!!!!

I wish you were here - I woud be round to drag you out for herb tea and a lovely walk and a big hug!!!!!

OK - you are like I was - you have found something else to fear - the Drs say you are oK - so you fear they are wrong - you can accept that - so then your fear this is all damaging your body - sometime you have to TRUST - them and you - and if you TRUST fear vanishes - cos fear and trust dont like being in the same room together!!!!

Doing nothing while you are feeling like this is like the totally wrong thing to do - read the post I just put on 'Whats your Symptoms today' - that is what I learned from therapy to get past depression

OK on the food - I couldnt put food in my mouth 4 months ago - couldnt swallow - I was so depressed - I was on ADs and other mind altering muck the psychiatrists had given me (NEVER again!!!!) - I didnt know who I was - I tried to hurt myslef - I was THAT out of it - and I though I would never eat again - I would just atrtve to death - now I eat OK - OK not a lot cos of the peri GERD!!!! I started on smoothies which my sister made me - now I just bung 5 fruits into a jug with some yoghurt and crushed linseed - and I make sure I drink that through the day - and that is all I was having for days - so you can do it!!!!!

Dont envy people or compare yourself - been there and done that - you are fine and strong - I can read that in your posts - blimey - you have gotten through 3 years of hell - you have just forgotten what life is all about - but it is out there waiting for you - a big wonderful world - this is not wasted time - it is just a tough time - life has tough times and good times - it is OK - dont sweat it - accept it.

OK - on the balance - if they say it is vertigo - is it positional - I do exercise which makes me giddy SO my brain can learn to compensate - I have stopped being scared of the vertigo - I juggle which is excellent for hand eye co-ordination and it is hard to be depressed when you juggle cos you have to concentrate!!!!! I am not up to doing shows yet - but have gotten quite good!!!!!

They say procrastination is the thief of time - this is true - if you have something to do - do it - I am an awful procrastinator - terrible - I make lists and rewrite my lists - blimey if I just did some of it I would feel so much better!!!!

Dont look back - be in the moment - dont think you will get back to where you were - why would you want to be there - life is a forward facing journey - if you keep loooking through the back windscreen of the car you will miss all the great stuff out of the side windows and you are more likely to crash and not get to your destination!!!!!

Go out for a walk - seriously - and buy some juggling balls - nice colouful soft ones - you might get better than me if you practice!

Love

mele

Sportster-

I'm 47 and identify with much of what you are experiencing. Like you my symptoms get somewhat more manageable with xanax, so I know there is an anxiety component. Mine started about a year ago.
Like you, I ask, why is this not resolving itself?. It feels totally physical - you may feel ok when you go to bed, but you jolt awake from sleep with incredible anxiety, heart palpitation, etc. It goes on and on every day for months, and years. Like you, I wonder how your body can take such unrelenting stress without it affecting our health.

Even though you are somewhat young, you talk about working night shifts, your mothers' passing etc.
The loss of your mother certainly put a strain on you in some way, and working nights certainly messes with the normal circadian rhythms of your body. We are meant to sleep in the dark, not the light. I have been talking to a natural pharmacist who my gyno recommended and he believes that adrenal problems are rampant, particularly in women as they age. Even if you are young, the stress on your adrenals can affect your estrogen and progesterone. Once your adrenals are shot, you get the lousy sleep, jolting awake etc.
Your periods are shortening, like mine. This is certainly related to hormones. Hormones and stress are
interwoven so that its difficult to figure out what is what.

Also, if they actually found something that was diagnosed re the vertigo - did they give you a protocol for handling it? Are there meds? Exercises?

You wouldn't believe the symptoms that people on PS describe from messed up hormones. Unfortunately,
the traditional medical establishment does not recognize many of these symptoms, so, to get you out of the office, they write a script for xanax and antidepressants.

I am now struggling with the question as to whether I am physically dependent on the xanax that was prescribed and the extent to which it may have made things worse overall. How much xanax do you take and for how long? Was there a diagnosis? Do you take it regularly or just as needed? Have you told the doctor that prescribed it that its been 3 years and you are still suffering? Was the plan to keep you on xanax indefinitely? Do you feel better and functional when taking the xanax?

My suggestion is that if you feel you need to talk to someone find a therapist. But don't let them convince you that this is just a "head thing." Maybe call a compounding pharmacy and talk to them about your symptoms and see if they think you need to address something with your adrenals and or hormones.
Like me, your diet and exercise has gone to pot because of how you feel. Its a viscous cycle.

Sportster, I'm telling you this as someone in the middle of struggling, I haven't found what works yet. Like you, I question whether this really is hormones or adrenals or whatever. Your problem may not be hormonal in that you don't have elevated FSH and your estrogen is normal, but that doesn't mean that your body is in balance. If you never felt this bad in the past, something has changed and hormones are a good place to start looking. Did they check your progesterone? That is the first thing to start dropping and that
apparently accounts for alot of anxiety symptoms. Many women here have told me they have found relief with compounded progesterone and that is why I am testing now to try this.

When this began, I figured I had an anxiety disorder, but after a year of going the psych route, I am no better and am left with my anxiety, horrible sleep, and a bottle of xanax. I agree with Mele that worrying just makes it worse. I also believe like Mele that it is grounded in hormones and the way our whole endocrine system works. That's why it never goes away by itself.

These are the conclusions I have come to after a year of suffering in the way that you have described. I may be 100% wrong, but until the doctors give us solutions that actually work, we have no choice but to trade experiences in the hope we can find answers on our own.

You poor thing sportster, what a horrible time in your life. I agree wholeheartedly with mele and Teejay, take their advice. I was wondering if you have thought of going the natural way now that you have tried all the Doctors. How about a massage, this seems to be what you need for your back and neck. I have one fortnightly, my lady massages from my head to the bottom of my spine. You may need to have one every week until it feels more relaxed. This would help you heaps with migraines and tension. You also need to by some relaxation cd's or one on mindfullness, they work wonders. I know it's hard to find time in the day for relaxation but 20 mins is all some of the cd's are. I hope you find this helpful, let us know how things go for you.

Cheers Cheryl