Avatar universal

what's happening to me

Sorry this is long but I will give u the shorter verson

I too have this problem I black out I have had aura and have unusual spells of talking rubbish it makes sence to me but everyone else doesn't understand what I am saying.

Also had just one attack where I felt odd went dizzy lightheaded lost vision movement and speach.... I could shout for help but I could hear I had small rigety movements like jerking but that was the only time it happened.

Every blackout I have had I feel odd walk drunk get lightheaded loose vision speach and movement then after I come back around quickly and I'm fine.

Other symptoms drinking over 3 liters of fluids unless I get a bug then it reaches 6 - 8 litres of fluid a day the toilets is my best friend.

Also quezy stomach feel sick and vomit half of the time, shaky inside and shaky hand in spells, if I'm cold I'm bone chilled and shake with shivers, if I'm hot my skin is clamy and I swelter , migraine have been reduced .... Only because of mess but I still have a permanant headache that feels like pressure pushing on my head with sharp pains and throbbing on top of that palpatations irregular heart beat too fast and asthma I have confusion, disorientation blured vision on and off pins and needles in hands and feet and I wake up with no arms.... Can't feel them completely dead.

At the same time I keep getting trapped never in my back on the right hand side of spine. I already have a damaged coxic.
Oh and pains in ribs 3 or 4 years ago they said I have chostochondritis my ribs still stick out.
And I only have one kidney

I can't have beteablockers as it triggers an asthma attack which it did on wi 3 of taking them.

I seen a cardiologist had two visits other than a Hilton monitor did nothing he released me to a neurologist which I see tomorrow

my doctor thinks the blackouts are Syncopy and he also thinks I'm having seizures as one one of my attacks I couldn't write property couldn't hold the pen my head bowed forwards and left I had aura and few hours after it happened I looked at my notes ... It looked like a baby had written it.

My partner doesn't understand I've no one to talk to and I've been off work now for five weeks doctors orders ... Oh and they have told me no driving

I'm falling apart....... Help
Best Answer
875426 tn?1325528416
Well, hopefully, you have a glucose meter at home with test strips (or whatever) you can use to monitor your fasting blood sugar levels.  It's fairly easy to find normal values online for what a fasting blood sugar should be.  If they are abnormal, it's definitely something you want to bring up with your doctor.  Apples are supposed to be good for helping to control your blood sugar level I've read and cinnamon can have an affect too, so you might want to talk to your doctor to see if you should try both or either of these things to help if you have high blood sugar levels.

Getting a copy of your medical records is a great idea!  If you can organize them in a folder, they can be pretty easy to lay your hands on when you are planning to visit a doctor... you can have them at your fingertips anywhere you go.  You'll want to make sure if they look at them you get your copies back so you don't have to start over in getting more copies, which I imagine might cost some money?

If you don't have one already, please buy a blood pressure monitor from the store.  The instructions on them are quite simple and you can learn if you are having high blood pressure readings frequently or not at home that way.  Hypertension is definitely something to watch for if you have a lowered glomerular filtration rate (GFR) with your one kidney.  Also, if you do, avoiding NSAIDs such as ibuprofen I believe is generally advised too (have a sibling with two kidneys, but one is congenitally defective)- you probably already know that about NSAIDs.

There is a way you can do the "poor man's tilt table" test at home.  Use a blood pressure cuff that also takes your pulse.  Omron is generally a good brand if you can get one of those.  

Take your pulse or have someone do it that knows how- that's in case the monitor gets the pulse wrong (sometimes they seem better for the blood pressure than the pulse reading).  Lay down for about ten minutes.  Take your blood pressure and pulse with the monitor & then take your pulse in your wrist.  Then stand up.  Wait a full minute and take your pulse, etc. again.  If your pulse is more than 30 beats a minute faster standing than it is when you are lying down, you might even remain standing and take it again after you've been standing five minutes.  Record the numbers and show them to your doctor you and ask if you could be referred to an electrophysiologist for a REAL tilt table test.  Another test that might be done to confirm P.O.T.S. is a standing plasma norepinephrine test.

  If you learn you have any form of dysautonomia, including if you have P.O.T.S., as I do, feel free to join the dysautonomia forum here on medhelp and ask questions!  Here's a link:
http://www.medhelp.org/forums/Dysautonomia-Autonomic-Dysfunction/show/266  ;
28 Responses
Sort by: Helpful Oldest Newest
Avatar universal
Hi im back sorry its too so long I've been very ill.
Ok story todate the neurologist was obnoxious and arrogant ..... Its all in your head blah blah blah.
I've seen an endocrinologist and she understood everything two weeks later i receive a letter saying i have cfs/me........
Even though I've read up on it its not really sunk in.
I do also have ist, svt, multifocal ves along with chronic migraine, cluster migraine, costcondritis, and asthma.
Its alto to take in.
I am glad though as my partner is finally understanding how hard it is for me.
I've not had the tilt test yet but my doctor said he is gona send me to the heart center for one which is good.
Helpful - 0
Avatar universal
An update....  
Ok waiting for eeg results and my doctor has finally asked me to go in as he is gone refer me for a tilt test.
Other wise its same as I've done a poormans tilt test at least a few times I've had +30 - +59 increase on standing.
Medication sitting far pitzotifen and verapramil hydrochloride (calcium blockers )
Migraines have reduced some what better than before anyway
Helpful - 0
875426 tn?1325528416
If you want to do a little testing of yourself at home to see if you should ask for testing for diabetes insipidus, try going without drinking for 8-12 hours (do it at night to make it easier).  If you need someone to assist you during the experiment because you won't feel well, maybe you could see about getting a private nurse during that time?

If you still are having to frequently urinate large amounts of fluid toward the end of the time period, despite withholding fluids from yourself (instead of urine amounts becoming scant toward the end), you DEFINITELY should pursue asking for an endocrinologist referral and get tested for diabetes insipidus.
Helpful - 0
Avatar universal
Yes, your GP should arrange for a Tilt Table test, the Neurologist isn't going to arrange that.  

Still think this is DI.....can't say this is any POTS.  
Helpful - 0
875426 tn?1325528416
Generally, specialists want to stick to their niche and have the patient go back to square one- the primary care physician about issues they don't deal directly with.  Particularly if you test at home and it shows your heart is jumping in rate by over 30 beats per minute after standing at least a minute, you could, with evidence in hand (your recordings of the numbers), request to be referred to an electrophysiologist/cardiologist for a tilt table test.

Let me know the results of your EEG when you get them?
Helpful - 0
Avatar universal
Thank you, yes I have the aviva nano I've just got some more strips for it I also have the urine keto test strips and I think I will go and get a blood pressure monitor today.
I spoken to my neurologist yesterday and he said I would have to go back to my doctor to arrange a tilt table test ect
as he can arrange them????
I have the eeg in July and I'm waiting for my scan app, waiting game again.
Helpful - 0
Avatar universal
Are you in the UK?  If you are....OMG, the medical care there is SLOW and mediocre.  

Not sure about the POTS too, but anything is possible at this point.  

I still believe this is DI or something Endo involving the kidney.  

Well...keep us posted.  

Helpful - 0
Avatar universal
Its ok don't worry.....
So far I have an app for neurophyiology in July
waiting on scan app and eeg
I said to my doc about the urine being sweet .... He did no urine test or asked me for a sample I am gona get a copy of my records as I might be able to find out the actual results of blood, thyroid ect ......
But so far to me anyway it could be a problem with my single kidney with hypertension and something else not sure what.....
One of my friends thinks pots??? With Di
I don't know but what I do know is they need to sort it out.

Thanks for helping you have all been great!

Oh and if I get to the point I will go a&e
Helpful - 0
875426 tn?1325528416
Oops- noticed I made a number of mistakes on my last post to you.  I meant:

"I'd probably BE going to get emergent care."
"...how THEY could help me get stabilized..."
"...see if I could get my appointments moved UP..."

Looks like I need to proofread before posting, expecially as  they don't have an edit feature on this site!  I'm sorry about the blunders.  
Helpful - 0
Avatar universal
Please keep us posted dear.  

I hope you get some answers soon.  
Helpful - 0
875426 tn?1325528416
You suggested in your opinion this was not anything for a neurologist to investigate, but ideally an endocrinologist instead. You also suggested she should ask for a brain MRI, and wondered about diabetes insipidus and  about a possible adrenal issue.  

With diabetes insipidus and adrenal issues both having to do with endocrine hormones which the master gland, the pituitary in the brain, has a direct bearing on, I wondered if you were thinking of the pituitary when you suggested the brain MRI.  Now I know your answer is no.  Hope this clears up your confusion as to what I was talking about with my question?
Helpful - 0
875426 tn?1325528416
I sure wouldn't feel comfortable waiting if I were in your shoes.  I'd probably going to get emergent care.  If they sent me home with the really bad symptoms instead of admitting me and trying to figure out how the could help me get stabilized, I'd be calling regularly to see if I could get my appointments moved out (ie- did they get any cancellations where I could get a sooner appointment and tell them how bad off I was).

So you do have an EEG (electroencephalograph) ordered I take it, as that measures the brain waves while you sleep (guess you call it an egg head cap there)?  I'm glad they ordered that and the abdominal scan!  Did they not check your cortisol or electrolytes (ie- sodium, potassium, etc.)?
Helpful - 0
Avatar universal
No, that's NOT what I was thinking.  I haven't a clue what you were talking about.  
Helpful - 0
Avatar universal
Well....it's unfortunate you have to wait.  

Do keep us posted.  
Helpful - 0
Avatar universal
Ummmm ok the Endocrinologist the doctor did say he might refer me to after the abdominal scan an adrenaline gland has been checked this is due to water consumption, urine colour an sweetness and the one kidney issue
you have all been pointing in the right direction its just the long wait for doctors to move.... I have looked at Di and its the closest so far that I've come across.
And I now think that on the one occasion that I had a suspected seizure it was due to re occuring black out and low enoughblood pressure and Di all at the same time I also think I had picked up a bug I don't think my body could take anymore and i had the seizure.
Appointments waiting for scan on Stomache and egg head cap to monitor brain waves I am back at docs in two wk
Helpful - 0
875426 tn?1325528416
In diabetes insipidus, my understanding is a person can urinate copious amounts of fluid even during a test when they are withholding water from themselves.  The abdominal scan will picture her one kidney along with all her abdominal organs.

Kjo22 is drinking far too much fluid, and I imagine her electrolytes have been thrown off balance- very serious.  I hope she has a nephrologist given she has one kidney and that he/she is aware of the situation right now, including dark urine despite drinking way too much.  Is it a liver problem, is it old blood in the urine, infection, stone in the bile duct, etc.?  Way too many unknowns here.  The abdominal scan hopefully would pick up if there's a stone in the bile duct.  

The doctors need to know how much she's drinking if they haven't been made aware.  I wonder if they've checked her electrolytes?  

They may be suspecting Addison's disease with the low blood pressure/adrenal angle, but did they order lab tests of cortisol & aldosterone as a part of their adrenal gland check?  If the cortisol is too low, definitely an endocrinologist should be in the picture.  I still can't tell if the doctor is insisting no diabetes mellitus?

  When you mention brain MRI, Londres- if you are thinking in relation to a possible pituitary tumor/abnormality and testing from an endocrinologist proves hormonal abnormalities, there is a special dynamically done MRI of the pituitary gland, with and without contrast... done differently than a general brain MRI scan.
Helpful - 0
875426 tn?1325528416
On the blood sugar, how does that number translate when it comes to milligrams per deciliter, which has a normal fasting range of 70-100 according to one website?  

Did you talk to the doctor about the amount of fluid you are drinking?  It's EXTREMELY important.
Helpful - 0
Avatar universal
First thing that came to mind was a problem with your one kidney and that you could be dealing with DI (Diabetes Insipidus) secondary to a kidney issue. There are different kinds of DI too.  

Any imaging of your head done?  If not, get an MRI of the brain/head WITH constrast done.  A Urinalysis, a Renal panel  and a 24 hour urine test shoud be ordered as well.  

Your regular physician can order the above.  

This is NOT purely Neuro.  You are having some neuro symptoms, but this is NOT anything for a Neurologist to investigate in my opinion.  Ideally, you should consult an Endocrinologist.

Well....at least he has ordered a scan of your adrenal gland.  This will give some view of part of the kidney.  He should have ordered a scan of the entire kidney and adrenal gland.  

Sounds like a job for an Endocrinologist or a Kidney Specialist.....not sure which at this point.  
Helpful - 0
Avatar universal
Sorry its the predictive text its defo not got diabeties
but last night around 9.50pm I all of a sudden felt somethin wash over me and I started feeling quezy and lightheaded I was sat down.
So I checked my sugar levels on aviva nano and it had dropped to 4.6mmol I know this ain't low enough I am gona wait now and check it the next time i feel it drop.
Helpful - 0
875426 tn?1325528416
Deformed not got diabetes?  I don't understand that statement.  What did the doctor say about how much you are drinking?
Helpful - 0
Avatar universal
Went to my docs and told him everything
I have a few results stating low blood pressure the doc said deformed not got diabetes but is sending me for an adominal scan and adrenial gland check ? Hypotention could be one of my problems .... Got to wait now for the scan and egghead cap lol at the rate everything is going it could be 2014 by the time I find out what's going on.
Helpful - 0
875426 tn?1325528416
Wonder if they were looking at the results of somebody else's labs?  Happened to me once.  Same name, wrong patient.  Though first thing in the morning if your body's been holding it for hours, urine is likely to be more concentrated.  Did you call the nephrologist yet?
Helpful - 0
Avatar universal
They said the did a full check on blood including organ functions thyroids glands and told me all was ok
I'm starting to wonder ...... After I woke this morning I went to the loo and it was dark and had a sweet smell yesterday I had about 3 litres of liquids
Helpful - 0
Have an Answer?

You are reading content posted in the Neurology Community

Top Neurology Answerers
620923 tn?1452915648
Allentown, PA
5265383 tn?1669040108
1756321 tn?1547095325
Queensland, Australia
1780921 tn?1499301793
Queen Creek, AZ
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease