Need to vent...

[MonkeyMom4]

I'm feeling more and more like a lab monkey everyday. I started on Keppra last Tuesday b/c the doc saw some (minimal) abnormalities on an EEG I had due to blacking out.

On Thursday..my bad friend Trigeminal Neuralgia started to return. Pain level about a 6...which is MUCH better than the 10 I had last spring. Anyway PCP is finally starting to listen and I'm grateful for that. He said he would speak w/neuro and get back with me asap.  Turns out neuro was already out of the office on Thursday...was out Friday...and due to holiday weekend here won't be back until tomorrow (Tuesday).

Called PCP on Friday b/c pain was reaching around the 8 level so he prescribed Carbatrol.  After about 4 doses I started itching like crazy. Last night I was up for 3 1/2 hours scratching every part of my body. My lips kept going numb and random parts of my body felt like they were on fire! Very weird. I've read the side effects of both drugs but decided to wait until this morning to call PCP. He said continue but take it with benadryl.

Needless to say I am even MORE tired now than ever before.  Fatigue is one thing I'm trying to get rid of....ahhhh....

I'm hoping PCP calls tomorrow with something better because I can't live each day like a zombie.

I mentioned to PCP that neuro is sending me for a sleep study and is convinced that will be my answer! He just leaned his head against the cabinet and shook his head. I then told him that neuro said IF it does come back normal then he (PCP) should send me to rheumatoid doc and cardiologist...he then said that it sounds like neuro is coming to an end with his dx phase.

Here are my main questions to all you wonderful intelligent people....
Can lack of sleep (which I don't feel I'm lacking) cause all of this?:
TN
Fatigue
Low blood pressure
Low B-12
Proprioception
balance/coordination problems
tremors
vision problems
paresthesia
dysesthesia
heat intolerance

I don't suffer from headaches and when I wake up in the morning I feel ok...I wake up with all the things I hope to accomplish that day and then by 9 am my body is D.O.N.E. I then have to rest and/or cool down and then can attempt item #2 on my list. I shouldn't be walking and moving throughout my day like a 95 year old woman.

Speaking of that....last week I saw a 80 something year old woman mowing her lawn (I'm in Nebraska...tough women out here...lol) and I was jealous and sad at the same time. Good for her that she is capable of doing that and sad that I have a hard time making it down my 4 stairs in front of my house.


Thanks for letting me ramble (again)
Hope all of you are doing well!

-Kelly

[RedFlame]

Hi Kelly,  that does sound like something is wrong.  Like everyone has said, go through the sleep study so you will have it in your records.  Then find a different doctor.  Every step of this is hard.

Hugs,   Red

[michelleislay]

ah, kelly, this doesn't sound right at all.  i can't believe your neuro is telling you lack of sleep!!

man, and i thought my experience was bad.

yes, definitely get that sleep study done and out of the way, just so you can prove, sleep is not the issue.  (i've been going through physiotherapy for my back for the very same reason!!)

do you have an option of getting a second opinion if this neuro continues to push you the wrong way?  

has he/she ordered mri's at all?  

yikes, and i hate to hear that you are suffering from TN as well!

please do update us and let us know how you are doing...

xoxoxo michelle

[Sailorsong]

Does your Neuro have a lot of info about CPAP and sleep study clinics in the waiting room?

A few years ago I was sent by my PCP to a neuro because of my MS Sx. He also felt it was a sleep problem and scheduled me for a sleep study. After the test was finished the nurse that did the test told me that I stopped breathing 3 times ( my natural tendency is to hold my breath when I feel strong pain)during the night and that they were of no concern.

Then when I saw the Neuro  he told me that I stopped breathing 23 times and that I needed a CPAP and that was the cause of my problems. At the same time he also scheduled an EEG for me. When I showed up for that I noticed that his office was filled with pamphlets about CPAP and a sleep study  place which is where he had sent me for the sleep study. On further investigation I discovered there were several sleep study places in the town, but he only had the literature for the one place. I suspect he was invested in the sleep study clinic in some manner.

Dennis

[Lulu54]

Kelly, If lack of sleep causes that long a list of problems, there are all sorts of workers who should be in the same condition -

Go ahead and do the sleep study to put this question to rest.

You can ramble all you want to here.  
Lulu