shaking attack with drooling

[taniaaust1]

I have CFS and get over 60 (umm 82??) different symptoms with it.

Yesterday I got a new symptom with a body esp head, very visable shaking episode I had (this shaking is common in CFS). The thing was on this occassion, I uncontrollably drooled everywhere with it . Ive never drooled before with that symptom!!

So hence are trying to work out now if this new symptom is just yet another normal CFS one, which comes with my illness or not or does this sound like I had some kind of fit???

As my friend who witnessed this shaking attack (and went and grabbed me and held me cause of it cause i almost collapsed..scaring him), has a severely epileptic daughter and he said he had thought i'd been about to have a seizure. He said that I looked to be between having a grand mal seizure and being normal.

So I went and researched epilepsy to see if drooling happens then and thou i didnt find out my answer, I came across that after seizures.. headaches are common. Anyway I DID get a bad headache, immediately after this shaking and drooling incident.

I do go unconscious at times to my knowledge (that has happened 3 times in past 6 mths.. one time the friend who witnessed this said i was out cold for 3-5 mins). I put this down to the POTS I have and my heat sensitivity (as on one of these occassions, I went unconsicous cause I cant stand the heat). My CFS specialist thou suspects it may be my heart (due to heart problems being rampid in my family).

Anyway.. drooling with shaking incident??? anyone?? any ideas??

(on research at this site, I can see that those with POTS can have also Dysautonomia which can cause drooling.. so maybe it's just that thou i cant see head shaking listed with Dysautonomia.. thou being a CNS problem. maybe one would also shake???)

[elke]

Hmmm... I wonder if you might have what I have. I don't know, but will share this information and you can do with it what you like:

For years, I was told I might have chronic fatigue syndrome. But my neuro symptoms seemed a little too extreme to me (my reflexes were brisk), so I went to a variety of neurologists and eventually got diagnosed with something called Hashimoto's Encephalopathy. It is a rare complication of autoimmune thyroiditis- which I did not know I had, because my TSH and other thyroid hormones- checked multiple times- were always normal. In fact, I was reassured over and over that my thyroid gland was "okay".
This is common for a lot of HE patients. Many of us are "euthyroid".

Because it was suggested several times that I had CFS throughout the years, I am left permanently wondering if perhaps some cases of CFS might actually be what I have. There are a lot of overlapping symptoms: I had swollen lymph nodes (in my neck- I think they were draining my thyroid!); I felt chronically fatigued- the wheelchair type experienced by CFS'ers; I had frequent headaches, often seen in CFS; I had brain fog, often seen in CFS'ers; I had balance problems, often seen in CFS. The list of overlapping symptoms is quite long- too long to list all of them here.

The reason I bring this up is because you also have been diagnosed with CFS but now have what I think sounds like a seizure.
Hashimoto's Encephalopathy is known to cause seizures. At least half of HE patients get them. I had some myoclonic jerks for a while (which are also seen), but never seizures. But every case of HE looks different...
Some people with HE are quite ill and can develop psychosis and/or slip into comas. Every case is different and you can have some or many of the symptoms. The most common symptom according to one study, however, is "central fatigue"- the profound fatigue seen in MS and CFS. This study stated it was seen in 100% of the 18 HE cases they looked at. Another common thing seen is diffuse slowing on EEG and brain hypoperfusion.

I don't know if you want to look into this at all, but because it took me 8 long years to reach a diagnosis, I thought I'd put it out here. I know other people have gone much longer undiagnosed than I did, but it really hurt, given all the doctors who did not take my symptoms very seriously.

HE, also known as SREAT (steroid responsive encephaloapthy associated with autoimmune thyroiditis) is very responsive to steroids- even just a single pulse and taper in many cases.

HE is diagnosed by checking thyroid ANTIBODIES, even if the hormones are normal. This is not done typically, as doctors are trained to check antibodies only if the hormones are off first.

I was pretty shocked to learn I had HE and by default, Hashimoto's Autoimmune Thyroiditis. For 8 years my doctors kept telling me my thyroid gland was healthy. Then I had an ultrasound on it which showed it was full of tiny nodules from the autoimmune destruction.
I was pretty sad, because I know that those nodules did not just get there overnight, and were there when I was being told my thyroid was A-okay.

Most doctors have never heard of HE/SREAT. It took me 8 neurologists, and it was a movement disorder subspecialist who finally figured it out. So, chances are, this has never even occurred to any doctor you have been to (unless you've been to a creative endocrinologist).

Again, I have no idea if this applies to you, but I thought I'd put it out there.
I am so sorry you have CFS and now the scary recent episode. I hope you get an explanation soon, be it HE or something else. It might be a good idea to be followed by a neurologist, as there are a lot of things that can cause seizures, and they can help determine if what you had was one or not.

Best Wishes.

[elke]

I just saw your response to the person with the DVTs and PE and you mentioned the MTHFR polymorphism that you have. I don't know if that changes any of the stuff I wrote above or not (it's too late to edit it). If you see a neurologist, you might want to mention all the previous testing you had done (sorry I didn't know about it)...
I did a little Pub Med search for MTHFR polymorphism. There's well over a thousand articles listed and so I was not able to look over all the listings, but there was one that sort of stood out as possibly relevant:
It's the listing for the journal, Seizure 2007 Sep 26 and the article is titled "A High Frequency of the MHTFR 677CT Polymorphism in Scottish Women with Epilepsy".
Not that you have epilepsy or anything (or are Scottish), but it might provide some kind of useful info.

[taniaaust1]

Im in the subgroup of CFS that is often called ME, (thou now they want to go calling the two different things the same thing! but many specialists separate these two things). ME patients often do have a lot of obvious neuro issues.

"But my neuro symptoms seemed a little too extreme to me (my reflexes were brisk), "

ummm interesting. One of my symptoms (also an ME one thou), is hyper reflexia. I almost kicked doctor in head when he tested my knee reflex one day it was sooo over reactive.

"I had some myoclonic jerks for a while (which are also seen), "

Ive had severe jerks at times of CFS crashes

Thanks.. You've certainly given me something to think about.

I think I'd better make sure Hashimoto's Encephalopathy is ruled out in my case. I'll going to go throu all my previous test results to see if that has been ruled out in any way.

[taniaaust1]

elke.. ive just been throu my medical file to look to see if i'd had the test you said already done

"HE is diagnosed by checking thyroid ANTIBODIES, even if the hormones are normal. This is not done typically, as doctors are trained to check antibodies only if the hormones are off first."

Ive had my thyriod hormones checked a couple of times (my thyriod hormones were normal).. and my specialist has checked my thyroid autoantibodies too.

My test results there say
"Thyroid Peroxidase (TPO) Antibodies 5 IU/mL (<50)

A TPO result less than 50 IU/ML virtually excludes the possibility of active Hashimoto's disease"

Sounds like your doctors werent all that though with their tests and they also didnt try to gain any supportive evidence to match their CFS diagnoses. Ive had soooo many different tests Ive been put throu to rule out stuff.

Ive also had tests done which have helped also to confirm that CFS is the right diagnoses (rather than only just ruling things out). Some abnormal results are common in CFS/ME
eg my EEG brain topography shows beta frequencies when my eyes are closed and elevated EEG in beta .. (this is abnormal without a cause, in general population but a common find in CFS so something to look for).

Thanks anyway.. it is good to make sure nothing has been missed. Good to hear too that my doctors havent missed checking things.

[acuann]

What meds are you currently taking?
DOM

[taniaaust1]

blaze.. im in Australia. Not ALL CFS cases are lyme!!

If you still believe they are.. how would you explain how CFS is just as common in Australia as elsewhere, but we dont have the same incidence of Borrelia as elsewhere? If ALL CFS is caused by lyme..shouldnt we then too have those bacteria common here?


following is info from some big studies on Borrelia done in Australia. You will see that non of our tick borne organisms have been shown over here to affect humans and no lyme organisms have been ever isolated from a local Aussie (who hasnt been overseas).

So how on earth could all CFS by caused by Lyme??
"
Lyme disease (LD) is a tick-borne zoonosis caused by the spirochaete bacterium, Borrelia burgdorferi. Since the disease was first recognised in 1975 it has become the most frequently reported human tick-borne infection worldwide. It has been reported from every continent (except Antarctica) although doubt remains as to whether it occurs in the southern hemisphere in general, and in Australia in particular. "

"The only species of ticks shown to be competent vectors of B.burgdorferi to humans belong to the Ixodes persulcatus complex, including I. scapularis and I. pacificus in the United States, I. ricinus in western Europe, and I. persulcatus in eastern Europe and Asia. No species of this complex exist in Australia. "

"Conclusions - Australia
There are some major differences between Australia and the endemic areas of the northern hemisphere with respect to the natural history of LD:
No ticks of the I. persulcatus complex, the principal vectors to humans in the northern hemisphere, occur in Australia. In eastern Australia, the logical candidate vector would be I. holocyclus which has a wide host range and is the most common tick biting humans. It was unable to transmit a North American strain of B.burgdorferi but an association with a so far undiscovered Australian spirochaete can not be excluded.
None of the mammal species identified as reservoir hosts in the northern hemisphere are present in Australia. There are reports of spirochaetes in Australian native animals, and a local mammal could be a reservoir host for an indigenous spirochaete that occasionally infects humans through a tick vector and produces a clinical syndrome similar to LD; however, no spirochaete was detected in the 12,000 ticks or animals processed.

Summary
The diagnosis of LD outside known endemic areas cannot be based solely on serological tests especially if they fail to conform with internationally accepted criteria, because of the high incidence of false positive results.

A clinical diagnosis in a non-endemic disease area (especially of Stage II or III disease), is difficult to support without isolation of the causative agent from the patient, from other patients with similar illness or from a known vector in the region.

The existence of LD in Australia will remain controversial until an organism is isolated from a local patient and fully characterised, or until a tick-borne organism can be shown to be responsible for the human infection. If it exists it shares few of the epidemiological or clinical characteristics of US or European patterns of LD.
"
Further Reading
Baldock, F.C., Yamane, I., and Gardner, I. (1993). Pilot survey for Lyme disease antibodies in Brisbane dogs. Australian Veterinary Journal, 70:356-7.
Barbour, A.G. and Fish, D. (1993). The biological and social phenomenon of Lyme disease. Science, 260: 1610-1616.
Dickeson, D. and Gilbert, G.L. (1994). Lyme Disease in Australia? Western immunoblots not the final answer. Annual Scientific Meeting Australian Society of Microbiology, A125.
DOGGETT, S.L., RUSSELL, R.C., Munro, R., Dickeson, D., Ellis, J. Avery, D., Hunt, C.L., Simmonds, J. and Trivett, N. (1994). Lyme disease - the search for the causative agent in southeastern Australia. Arbovirus Research in Australia. Arbovirus Research in Australia, 6:313-315.
Hudson, B.J., Barry, R.D., Shafren, D.R., Wills, M.C., Caves, S.F. and Lennox, V.A. (1994). Does Lyme borreliosis exist in Australia? Journal of Spirochaetal and Tick-Borne Disease; 1: 46-51.
Piesman, J. and Stone B.F. (1991). Vector competence of the Australian paralysis tick, Ixodes holocyclus, for the Lyme disease spirochaete Borrelia burgdorferi. International Journal Parasitology, 21: 109-11.
RUSSELL, R.C., DOGGETT, S.L., Munro, R., Ellis, J., Avery, D., Hunt, C., and Dickeson, D. (1994). Lyme disease: A search for a causative agent in ticks in southeastern Australia. Epidemiology and Infection, 112: 375-384.
RUSSELL, R.C. (1995). ?Lyme disease in Australia - still to be proven! Emerging Infectious Diseases, 1: 29-31.
Wills, M.C. and Barry, R.D. (1991). Detecting the cause of Lyme disease in Australia [letter]. Medical Journal of Australia, 155: 275.

Stephen L. Doggett, Richard C. Russell, Richard Lawrence and David Dickeson
Originally appeared in: Inoculum, 4: 1-4. Modified and updated; November, 1997.
..............

oh and blaze.. i have been checked for various bacterias known to be in Australia eg the various rickettsia groups etc

[taniaaust1]

What meds are you currently taking?
DOM

currently take the following meds for the various conditions i have
Panadol (for pain)
folic acid
methyl cobalmin
trimethyl glycine
pyridoxal 5 phosphate
probotics
fibre supplements
calicum
fish oil
Ginseng (sometimes)
Glucosamine
Vit C (whenever needed)
Magnesium (organic form as Im intollerant to normal ones one buys)
Mitolift (a supplement which has has B vitamins, alpha lipoic acid, ubiquinone, acetyl-l-carnitine).. that's to provide some neuro protection, protect krebs cycle enzymes and energy transfers.
olive leaf extract (whenever needed)

Im meant to take Whey for the glutathione... but are completely intollerant to it.

Ive given up taking D3.. (as it didnt raise my levels).. so im still very low in that

I would probably be on pharmacuticals.. but Im fairly drug intollerant due to MCS so doctors are reluctant to put me onto drugs due to my drug reactions.

I do take eryth (umm i forgotten the full name, its a strong antibiotic) at times.. 2 courses in past 3 mths, (with the olive leaf and nilstat an anti fungal med so i dont get thrush due to antibiotic), for what doctor thinks is Staph? infection.
Im still carrying staph? in my leg but its only currently flaring up whenever I get a virus, so only whenever my system is more down. I wont bother about it for now as I hate taking antibiotics and only do when really needed.

[taniaaust1]

i went to the doctors today (as i had to go anyway to pick up some test results, which I then found had been stuffed up, as nurse had got me to put the samples in wrong bottles! So i need to do them all over again),

and while there told him about the drooling incident i had.

He seemed uninterested about it and wanted me to go back to one of the CFS specialists Ive seen before anyway, so I guess I will go there.

Doctor today treated me like the uncontrollable drooling is me overreacting. Doctor told me I shouldnt think about my symptoms so much. (If my friend who had got scared witnessing my "crash" the other day, had gone with me.. I think he would of almost killed the doctor for saying that!)

So i wish I didnt even bother telling doctor about it (no wonder I rarely bother about them). I just cant get a good doctor in my town, thou my specialists are good but they are far away.

[mkor4]

Hi Tania
Drooling can occur during a seizure so it might be worth having another eeg to see if it shows any epileptiform spikes.

What tests did you have that diagnosed you with cfs?

You typed a reply previously to my post "anyone pulsating please help urgently"-I was wondering if you would be able to send an email to marykorunic@yahoo.com.au so i could ask you a few questions about it please.

Thankyou