Urgent question regarding my case.

[universalmind38]

Hi there,

I'd like to ask for your consultation regarding my case. I've been around the whole place looking for help and nothing has helped me since March. Doctors already gave me remedies/medicines for my problem and to address my concern, but they didn't work.


Scenario:
I had a head injury last November 2010. Since then, numerous symptoms arised every succeeding month.
-sticky-like perspiration on right hand/decreased sensation slowly crawling from right fingers to my hands.. and eventually throughout the body (after the accident)
-Myoclonus and fasciculations (December 2010)
-Gait problems (body going to the right/February)
-Sleep decreased and unable to sleep during the afternoon/profuse perspiration and tears(started Mid-March)
-body temperature problem and appetite problems w/ loss of desire to drink water/ different sensation on the body (started March)
-Gradual insomnia and sensory ataxia/walking problems (from Mid-march to late May)
-Full Insomnia (June until this current time)
-developing "dementia/stupor" due to sleep deprivation and possible cellular attack of prions in the thalamus (as of this time)
-attitude change (agressive toward other people)
-muscle spasms in the back of the neck and head (gradually increased in pain and extension since december)
-aneurism like pain in the head and severe head aches probably because of the severe muscle spasms in the back of head extending to the lower spine which hurts pretty bad.. (June onward)
-as per friend of mine, I might be suffering Thalamic and Hypothalamic degeneration due to the closed head trauma and it just showed up progressively since the day of the accident.
-Valium was used during june. 15mg didn't show any effect. It took me 100mg to have sleep but still felt agitated the next day. :(

We already checked out all the "best" doctors here in Manila regarding my case. All they do is say that "you're alright" because all tests (MRI,MRS in the Thalamic area,EMGs,ECGs,CT Scans, Blood tests) were alright except for some lactation and very low GABA markers in the thalamus (which is still under investigation... but the problem is already gotten worse. My mom denies the fact that I might have "Sporadic Fatal Insomnia" because of the doctor's feedback. As of this time, there is still no medicine working for me.

[ggreg]

GREAT Universal Mind!  I'm glad you are getting an endocrine workup.  Perhaps this will show your head injury also goofed up those brain glands.  And I also think it is perfectly okay to get the medicine you need however way you have to, to make your discomforts stop.  I think "the drug war" and not giving people adequate pain relief is the wrong way to approach misuse of drugs.  But that's for another forum!  We'll see what happens, let us know.

[universalmind38]

Endocrine work up is currently being made. Recently, I'm having severe tension headaches w/c pain killers are of no relief and very low body temperatures.

Right now, I'll be ordering Gamma-Hydroxyburate. As illegal as it may seem, this is the only drug w/c can give me relief.

[selmaS]

  One last thought did they do a LP to see if u had ICP?

[ggreg]

Universal Mind,
I have a couple new thoughts based on some things Selma brought up, bless her, and also I want to thank you Universal for telling us your medicines.

Sometimes when someone goes thru a head injury, this can impact various parts of the brain just from the force it took to fracture the skull.  Amongst those things are the thalamus, hypothalamus, and pituitary gland, which are located together right in the center of the brain.  When any of those glands malfunction, you can get, for examples:  With the thalamus a one-sided burning or aching sensation and mood swings; with the hypothalamus loss of control of body temperature, hunger, thirst, fatigue, sleep problems; and with the pituitary that gland is sometimes called the "master gland," because it then sends all the hormones into the body to every endocrine gland, each one controlling all sorts of sensations and actions of the body.

So, irregardless of whether injury to those glands shows up on a scan or how the glands may have been injured (stroke, increased brain presssure), I do think since your symptoms are kind of like a whole-body thing, which hormones from those glands controls so many things thruout the whole body, just a little different than nerve or brain damage, then could be if you did what I think I once mentioned, and go to an endocrinologist, and let him do a complete workup on your entire endocrine system (which SHOULD have been done when you showed up with a head injury), then he may find you need some hormones to make up for any you are not getting on account of your head injury compromising their function.  Mind you, a regular doc can do a quick check of, say, your thyroid, but he cannot do the involved testing an endocrine doc can, they break those things down big-time, and they also are fully educated on symptoms of endocrine malfunction.

I hope you understand what I am saying.  You should go to an endocrinologist.  Or please tell us if you recall specifically going to a clinic called, "Endocrinology," or if you have reports that show ALL hormone levels in your body, there are quite a few.  You could even post over in whatever Endocrinology or Hormone forum we got here, and see if they identify with you.  

I also do want to say one thing about your pain medicines.  You are NOT getting adequate pain relief from Lyrica, there is no way that alone will do it.  I take it for specific pains I have, but I also HAVE to take opiate medicines for different pains I have, all to treat my back that was broke in three places in a car wreck, and the resulting nerve injury effects throughout my body.  Now, only reason I can think they haven't given you proper pain relief is docs don't want to give out opiates, nor should you ask for them.  But what you should do is next time you see the doc who is giving you Lyrica, you tell him precisely where you feel the most pains, limit it to perhaps three places, and if you have to break down and cry, then do so.  He will either up your Lyrica, or add in an opiate type drug, or he won't.  If he won't, then every doc you see from here to kingdom come, you tell them those three places that hurt.  

Keep us in the loop.  Visit an endocrinologist, please.  You just might have had an injury to those glands when you sustained a skull fracture, and hospitals are supposed to check on that, but apparently yours did not, becuz it sure is looking a lot like an endocrine problem you may have, rather than neurological.  But I just hope a more recent scan has been done on you.
GG

[selmaS]

  May I ask when ur last MRI was?

  Do u have copies of it and the reports...the reason I ask is sometimes things are over looked....or considered incidental...there is no harm in getting a 2nd opinion and a review of the MRI by a diff dr...or a new one if it has been sometime since the last one that way  they can compare the 2.

   just a thought

    "selma"

PS- have u looked at ur vitamin and mineral levels?

[universalmind38]

I've done all that was stated. PT, accupuncture, and therapy proved to be worthless. MRI and MRS have been done. No growth or anything else (except a depressed fracture on top of my skull).

Medications:
-Lyrica
-Baclofen
-Myonal
-Zolpidem

None of these have been proving to give any sort of relief and action on the body.

[selmaS]

  Hi...I have a question for u...did u have a MRI of the brain and or cervical spine? When was the last one done....how long ago?

The reasons I ask  are these...u mentioned lactation, that can be the result of pressure on the pituitary gland.

2nd is the fact u were in a MVA and ur symptoms progressed over time...just as  a syrinx might form ...this is a cyst, a sac filled with CSF fluid that can grow larger putting pressure on the spinal cord and depending where it is located can have different symptoms.

So, depending how soon after ur accident ne MRI's were done it may not have shown up as it can be very slow to develop...but once it has can either continue slowly or very quickly change to a rapid growth.


  Is it possible to get copies of ur MRI and the report where u r?...We do that here in the states and it makes it easier to get a 2nd opinion.

     "selma"
  

[ggreg]

I hear you.  So, from what you say, I will make some assumptions and then tell you what I think you should try to get better.

So, I have to assume you have no brain injury,and you also do not have fractures or injured disks in your neck or back.  This leaves the muscles being all out of order and tensed up and swollen.  So, as I said in my post, you need to see a massage therapist, Swedish massage is the deepest kind, and it takes a few visits to get all your muscles worked out.  You may not feel better after your first visit, but after a few more, you should notice a slight improvement in your symptoms, so continue getting massages until you at least start sleeping better.

Also, I have to assume you have already gotten a second opinion.  And I have to assume you've had a recent scan done.  If you only had one done when your injury happened, that is not enough.  As I said before, changes can happen in the brain after the first scan is done.  But anyway, assuming more recent scans have indeed been done, and this must include the brain and spinal cord, and everything looks okay in the radiology report and the physician treating you has looked at the pictures and found nothing wrong, then there is the possibility that the Thalmus problem you mentioned is doing all this to you.  Thus, you might visit an Endocrinologist and let him run some labwork, blood panels, to check how not only how the Thalmus is doing, but your entire endocrine system.  If even one gland gets out of whack, it can cause all sorts of strange symptoms.

I would like to make a new suggestion, also, as to how to improve not only how bad your pain is, but also how bad your sleep is.  I realize that your ability to move and your general pain has slowed you waaaay down.  But one way to help pain and sleep is the very thing you do not want to do:  Get some form of exercise going, and in my opinion, the best one for you is to get up and go out of the house and go for an easy walk in your yard to start with, and then walk further around your neighborhood, until you can get to a park for a long walk.  This releases any tension in the body from all your aches, this activity allows the body to rest better, and while it might be hard, the benefits outweight any initial discomfort or inability to walk in a straight line.  Take a cane if you have to, or use a walker with wheels on it, just whatever it takes to get outside and go for a walk.

If you don't mind, why don't you tell this forum the list of medications you are currently on to treat your symptoms.  Also, I want to know that you will promise me you will go to a massage therapist, and if you just plain refuse, then you must find a friend or relative who will rub out your shoulders, neck, and back for you at least once a week, with twice being ideal.  And some massage therapists will come to your home, they bring a collapsable table, a kit with massage oils, towels and whatnot.  And in addition, I want to hear from you that you will try getting outside for a walk, even if it's short, and I want to hear from you that you will keep trying despite the trouble it causes you.  Go outside at least three times a week.

Let us know.  We want you to get better.  If my assumptions are incorrect, then tell us, because that will make some difference in how we are to approach your constellation of health issues.

[universalmind38]

Actually, I really did everything that the doctors said. Tests have been made and still came out negative. The spasms in my spine only occured as time went by (February) and the injury was November last year. The insomnia was also gradual... Meaning that I lost the ability to sleep monthly. This is the most diabilitating symptom. Melatonin, Lyrica, and a bunch more of medicines have been administered and still had no effects.

[ggreg]

Well, I am not an expert, this is a patient-to-patient forum, but I know a little something about spinal problems and pain.  My best guess is when you hurt your head, you also wrenched your neck and back and body pretty good.  If this is true, then the symptoms in your hand and gait problems are probably peripheral neuropathy, which happens when nerves that come out from the spine and go into the extremities are compromised somehow.  All spasms and headaches are related to your muscles being wrenched during the injury episode, altho this may also include various spinal nerves being compromised.  BUT if only your head was hurt and nothing else, then the injury to the brain is affecting how your body is functioning.

Let's say you did wrench your neck, for example, when you injured your head.  The muscles get all tight in there, inflammation sets in, swelling squeezes the nerves, and the whole thing gives you a roaring headache and a painful neck.  Right now I want to make a suggestion that you have that neck of yours massaged out really good, an ordinary massage therapist can do this for you, you could go in monthly for a few times, might help.  Heat applied to the neck, while you're sitting around watching TV, also provides temporary relief.  Hot baths do the same thing, and also helps the whole body feel better.  

I want to make a comment about your sweating and your lack of desire to drink water.  Sometimes medicines can cause sweating, so pay attention to when the sweating happens in relationship to when you take your pills.  Others here may know more about that part than I do, tho.  Sweating can also have to do with the endocrine system, which I know very little about that.  I just know a little about neurology.  On your water drinking, you know as well as I do that aside from regular exercise and outdoor activity, one of the most important health issue solutions is to DRINK WATER.  If you don't like the taste, hold your nose.  Every time you are in the bathroom doing whatever, after you wash your hands or brush your teeth, keep a cup in there and guzzle one down, so it's convenient and becomes a habit.

Let me also try to help you with your insomnia and mood.  If a person is in pain, they cannot think clearly or focus well, they cannot sleep well, they get sad about being in constant pain, so unless you can get some adequate pain relief, this cycle will continue.  You know the drugs you've tried, so I'm hesitatnt to suggest anything, but I will say that Lyrica and the Opiates do a pretty good job of settling all that down.  And in order to tackle the sleep problem immediately, get some natural Melatonin at the health food store, they put it in pill form in a bottle, and take those as directed like a sleeping pill before bedtime.  You will sleep much better, and you can take it right on along as you please.  Once your pain control improves, you will find you need the Melatonin less and less.  Do keep in mind some medications can keep a person up, so the way I do is I take the last dose of my stuff around dinnertime, so as not to interfere with my sleep.  If being overheated makes it hard to sleep, for gosh sakes, just turn on a fan, open the window, turn on the A/C, wear very light PJs, lay on top of the covers, live the way you feel.

BUT now, let us say all this is from your head injury.  This DOES happen to people, to where the damage is so bad a person cannot talk anymore, or they lose their memories, or one side of their body wont function right anymore.  Now, your scans would have shown if you have any damage to your brain from the injury, or from a subsequent bleed, or swelling, just whatever isn't right would show up on a scan.  Since this happened fairly recently, just a year ago, stuff can happen in the brain for a period of time after brain injury, and so you should have a recent scan, and if you don't have one, you need one very soon.  In either case, get a disk copy of the images of any recent scan, as well as the radiology report, and have the office that has those things forward them to a new neurology group that you should go to, as a consult, a second opinion on your brain pictures.

Overall, the proper approach for your endless and painful and disabling conditions is to (a) offer physical therapy, (b) offer pain killers, (c) suggest acupuncture and massage, (d) order hydrotherapy, (3) and stabilize your spine with perhaps a back brace.  When these methods are exhausted, then a recent scan or a new scan of your whole spine, cervical, thoracic, and lumbar spine should be done, and that would guide a neurosurgeon to offer a surgical fix to any injury you have sustained in your spine.  Again, you can use your second-opinion neurology group to treat you.

I cannot believe you have not seriously injured your spine in some manner, nearly every symptom you mention suggests ruptured discs, spinal stenosis, fractures, or at the very least some very badly ripped/strained muscles and tendons and ligaments, which would affect your nerve function just like a broken bone or vaporized disc would.  It hurts like mad!  However, there is a chance since you specifically had a head injury, something is wrong in your brain.  The only other possibilities lie with the Thalamus sort of stuff you brought up, which I'm no endocrinology expert, and thus I think you should also post your symptoms and so forth over in that department.

If you have to, it's a good idea to travel to get your second opinion, and going to a large university hospital is the best choice, or at least a neurology group that has hospital privileges there, go within your state or an adjacent state.  Be sure the actual PICTURES of any recent scans are forwarded to them, any records, etc., your current doc offices will do this for you.  I know this is long, and I would edit this thing, but I've run out of time this morning and have to go.  Keep us posted, and I'm sure others will jump on here and have lots of good advice for you, even if it's contrary to mine.  And then I hope something here will eventually steer you to the help you so desperately need!  Oh, I'd be so fed up if I were you!  Let us know how things go, ask whatever you want to ask, you have got a long road in front of you, and everyone here just wants to help others so much.  GG