Neurological Concern (Inner Tremor, Sleep Shakes) Mystery Illness

[bartleyk]

I am a 29 year old, white male in Michigan, USA.

As many visitors here might experience, I have had an array of unusual neurological symptoms over the past 8 months.  I have seen several doctors and specialists (including second opinions) to include neurologists, infectious disease docs, etc.  I have had pretty much every test under the sun (HIV, MRIs, EMGs, EEGs, Sleep Studies, Western Blot, and the list goes on and on) and everything has come back normal except for 1 and I will go into that further down.

Ok, so let's get on to my symptoms.  At times I have this feeling of an inner tremor of sorts.  It is real hard to explain to someone who hasn't felt it but I would correlate it to having an extreme feeling of a caffeine buzz.  I actually feel my entire upper body tremor internally for a period of time and then as mysterious as it appears it just goes away.  There is really no set schedule on when it comes and goes other than at night which I will get to next paragraph.  It thus far comes and goes randomly but appears to be coming on more frequently as of recent.  The odd thing is that if my wife touches my arms or stomach or chest, etc., she cannot feel a tremor type sensation, I only feel it internally.

Having said that, at very minimal times will I actually notice a difficulty holding my hands stable if I try to hold them in a certain, unrelaxed position.  For example - if I try to hold the phone to my head at just the right angle, sometimes my hands will tremble trying to hold it, but at other times, no problem at all.  I only have the problem when I have the internal tremor but most of the time I have the inner tremor I still don

[toby1101]

toby1101  
Mar 11, 2014
My TSH is 2.5. My T3-T4 were at the low end.
I have an update on Mayo. My ferritan level was way high. I have iron overload. Diagnosis below. Reading about iron overload it may be my issue. I need to donate some blood to get iron levels down and see.
Iron overload messes with thyroid and adrenal glands. Also can cause issues with nerves. Hmm

HFE: C282Y: Homozygous. Two copies of the C282Y mutation. H63D: Not detected. This result confirms the diagnosis of or predisposition for hereditary hemochromatosis (HH).
RECOMMENDATIONS
Dr. DE GROEN (GI)
Start phlebotomies every week or every other week. Goal: iron sat <50; ferritin <50. Measure those after 8 and 16 phlebotomies. Before each phlebotomy measure Hb. If <11 skip a session. Once down, 4-6 maintenance per year. Close follow up with local providers recommended.

[toby1101]

toby1101  
Feb 23, 2014
I got home Friday from Mayo. My sleep study was a fail. I never had an episode so it was not recorded. They had extra sensors tied to my head to try to determine what areas the issues were developing from. This was discouraging as this was going to be a great help.
Here is what the doctor said.
#1 Indeterminate spells
#2 Obstructive sleep apnea
#3 Insomnia
I met back with Mr. Blankenship to discuss results of his polysomnography, which is summarized separately. The study was done for two reasons, first and chiefly to explore his unusual nocturnal spells of somatosensory symptoms, which on clinical grounds would be most consistent with a hypnagogic somatosensory phenomena. What is somewhat unusual for that diagnosis is the prolonged duration of many of the symptoms, which are also of a peculiar dysesthetic quality. In any evident, there is no evidence for an organic primary sleep disorder to provoke the symptoms. On practical grounds, it would be sensible to continue to offer him symptomatic therapy, and he has benefited from amitriptyline thus far, started by his primary physician. I discussed with the patient that further titration of amitriptyline could first be attempted under the supervision of his primary physician, and if that is ultimately ineffective or still producing suboptimal results, a therapeutic trial of gabapentin could be offered in the same fashion. Dose ranges for amitriptyline typically effective for relief for dysesthetic type symptoms would be broadly in the 10 to 100 mg nightly range. When he started too high at first, he encouraged some side effects, so titrating by 10 mg increments would be reasonable, probably every two to four weeks, with a goal dose in the broad 50 to 100 mg nightly range. The lowest effective dose should be used. If adverse effects, such as dry mouth, constipation, dizziness, or carryover sedation in the morning results, the dose should be lowered as appropriate to eliminate such effects. Gabapentin could be used in an analogous fashion, starting with doses between 100 and 300 mg at night, and titrating by 100 to 300 mg increments as needed and tolerated, to achieve doses in the 1200 to 1800 mg nightly range. If he benefits from this but needs higher doses, he could be switched from gabapentin to pregabalin (Lyrica), dosing between 50 mg and 300 mg q.h.s. as needed and tolerated, titrating by 25 to 50 mg increments every two to four weeks as needed. Similarly, prescription Zolpidem or eszopiclone (Lunesta) could also be offered if disturbance maintenance insomnia symptoms continue. A helpful approach instead would be to try behavioral measures for psychophysiologic insomnia, including avoidance of watching the clock, getting up out of bed and avoidance of lying sleepless in bed for more than 15 to 20 minute intervals, going out to the living room to pursue quiet, distracting activities, such as reading or television watching, and avoiding work or daytime type activities, such as computer work or work-related tasks. Cognitive behavioral therapy and relaxation therapy measures could also be applied.
The patient appears adequately treated at his current prescribed nasal CPAP pressure. He did well with adjustments of nasal CPAP in the range of 10 to 11 cm.
Last, unfortunately, no seizures or spells were recorded during the polysomnogram, so while their nature remains uncertain, the empirical approach outlined above could be helpful to the patient for symptom control. I reassured him there is no evidence for a primary sleep disorder, such as a parasomnia, or for nocturnal epilepsy, given the absence of interictal epileptiform discharges throughout the night. Obviously, the absence of such evidence does not absolutely preclude the possibility of nocturnal epilepsy, so if the patient's disturbing spells continue, he could be considered for referral to the Epilepsy Clinic and prolonged video EEG monitoring, or at very least should have a thorough neurological examination and consultation. However, I suspect this will be unnecessary with reassurance and the empirical approach outlined above.
We have not scheduled additional follow-up in the Sleep Clinic at this time. If additional advice is sought from a sleep medicine perspective, he could certainly be referred back to us.

[yinsunyang]

I wanted to add to my last post, after reading your post sjb183, that I had all of your symptoms and diagnosis as well, including epilepsy. I don't know the exact cause, only that I had to maintain better health. Everyone is different, and I'm not "cured", but I thoroughly believe the inner trembling and other weird symptoms and/or diagnosis are our bodies telling us we're out of balance somewhere in our lives. Sometimes just better diet/exercise/reduced stress/and making changes in our thinking can help, but we often we'll also need supplements or even pharmacology. Myself, I got off seizure and all other types of meds as they caused a host of problems in and of themselves, but alas I'm still taking supplements. I hope my systems will strengthen enough in the future to eliminate them as well.

[JannaMorrell]

How are you now?

[yinsunyang]

I've had the internal trembling for years (along with a variety of other symptoms). Mine primarily occurred in the hypnogogic state (falling asleep, or upon waking), and I also got the jerking in my sleep. I'd been diagnosed with some neurological issues through the years, so I suspected this was also neurological, or rather a "sensitive system". One neurologist said it was anxiety. The other low seratonin and to take more D and magnesium. The breakthrough for me was after reading and following the book UltraMind Solution by Dr. Mark Hyman, which is functional medicine (a cross between Western medicine and Naturopathy).  I highly recommend reading this book, or possibly one of his other books if you're not having any emotional/mental issues as well. I no longer have the trembling, or the other symptoms I had - as long as I keep my nutrition good, get to sleep prior to 10PM, and take certain supplements. I suspect the supplements that helped the most for the trembling was OTC Gaba, as it erased a lot of other symptoms I had as well. In case it wasn't that, for the record, I'm also taking Ashwaghanda and 5-HTP, the former which helps with anxiety and adrenal fatigue, and the latter with low seratonin. Best wishes to you all in finding health and balance in your lives.

[toby1101]

I have an appt at Mayo Clinic on Feb 14th. I hope they can finally come up with the answer. I will repost either way. Wish me luck.

[Char1981mom]

Hi did they ever find anything?

[me_a_name]

hi toby1101

My wife and I thank you for your posts on tremor.
We started taking vitamin d3 in November 2013 and in December 2013
found the following we take 2 times a day(4000 i.u. of d3 per day):

w w w.nutricology. c o m /Vitamin-D3-Complete-Daily-Balance-w-A-K2-60-Fish-Gelatin-Caps-p-16698.html

It seems to reduce the wake-up tremor we experience around sleep at night.
There are two things I recommend you consider:

1. Restful and restorative sleep at the same time every night. No sleep
interference. Sleep interference causes sleep deprivation, sleep awakenings, low quality sleep and non-regular circadian rhythms.

2. Reduce vitamin d3 intake. According to the following expert the sensitivity
to vitamin d3 varies much from person to person especially if a person is
exposed to sunlight. The expert uses negative health effects and not blood level
of vitamin d3 to determine  too much vitamin d3. The expert is sensitive to many things.

vitamin d:
ctheblog.cforyourself. c o m /2008/12/overdosing-on-vitamin-d-side-effects.html
ctheblog.cforyourself. c o m /2011/11/vitamin-d-more-observations-on-sunlight.html

vitamin a:
ctheblog.cforyourself. c o m /2011/03/overdosing-on-vitamin-side-effects.html