Hashimoto's Encephalitis and Headaches

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Hawkeye913
New Member


Date Joined Jun 2007
Total Posts : 3
   Posted 6/3/2007 1:01 PM (GMT -6)   
Hi everyone,
 
New to the site and hopeful.  Sorry if this is in the wrong forum, but couldn't find a spot for my condition to fit into.  I was diagnosed with Hashimoto's Encephalopathy last fall.  Have done fairly well after IV steroids, but continue to battle headaches and tremors on a regular basis.  Just finished 2 months of oral prednisone (low dose) with an initial 4 days of relief, but a rapid return of symptoms.  I work about 7 1/2 hours a day (used to be 9 1/2), but don't function real well outside of that.  Would be very curious to talk to others with this condition and see how they are getting along.  Does stress play a role in making my headaches worse or more frequent?  Just let me know if there is another spot to post this that would be more appropriate.
 
Thanks!

baseballmomof3
Regular Member


Date Joined Apr 2007
Total Posts : 189
   Posted 6/3/2007 4:56 PM (GMT -6)   
Hawkeye, I have never heard of this condiditon.  Can you please tell me more about it?
 
THanks.
 
DX:  Migraines since June, 2006, kidney stones
 
RX:  Daily - Verapamil, Trileptal
PRN:  Relpax, Prednisone, Dilaudid, Lortab, Lidocaine Nasal Spray


Hawkeye913
New Member


Date Joined Jun 2007
Total Posts : 3
   Posted 6/3/2007 5:20 PM (GMT -6)   
baseballmom ---

Thanks for asking. Hashimoto's Encephalopathy is an autoimmune disease (they think) that has varying symptoms at onset that may include confusion, headaches, right sided weakness, tremors, myoclonus, and change in personality. Thankfully I did not have the change in personality (although I'm sure some people would have welcomed it!). After steroids, my confusion and unsteadiness subsided, but I continue to have the headaches, tremors and occaisional myoclonus. This is a very rare condition according to Mayo Clinic so not much info is out there and my doctor hasn't been able to completely figure everything out as of yet. Just wondering what others may be going through with the same diagnosis.


Thanks.

Annuk
Veteran Member


Date Joined Jan 2006
Total Posts : 1308
   Posted 6/5/2007 8:37 AM (GMT -6)   
Hi Hawkeye,

Welcome to Healing Well. Sorry to hear you have got Hashimoto's Encephalopathy. I do not know anything about this disease personally, and really feel for you that you have got this to deal with, seemingly with little support - as in other sufferers!

To answer your question about stress making headaches worse, well I can answer that one for you, and I am afraid the answer to that is usually 'yes'!!! Stress and anxiety can usually make headache more intense and more frequent and can extend the length of time the headache lasts too!!

But, I think this can be said for a lot of things that stress can make things worse! Please keep in touch as I for one would love to learn more about this condition from you!

take care

Ann
Co-Moderator of the Migraine/Headache Forum


oldfordlover
Regular Member


Date Joined Apr 2007
Total Posts : 52
   Posted 6/13/2007 7:55 PM (GMT -6)   
i was just directed over here from someone on the prostate cancer forum (I have that). I am surprised to find you--there aren't a lot of HE patients out there.

First my wife has HE--appears to have gotten it Feb 06.

headaches are brutal.

She has been on lots of morphine since Dec--and only now are trying to detox off of it.

We have really started to increase the topamax--hoping it helps on the headaches and also for seizure control. A lot of the HE patients are on the "HELPS" page on "http://lists.topica.com". They have been very helpful for us.

How high of prednisone are you on now?---the solumedral is usually 1000mg.

If there is anything I can do for you please let me know--I am often on the prostate cancer page and in chat.

HE is a vicious disease--but it is treatable. I think the hardest part may be the memory losses and thinking problems. My wife was in bed up to 23 hours a day at its worst--sleeping most of the time--

She is now up and able to work 3-4 hours some days.

It is good to meet you. I will see you on the "helps" page

David
Age 50
Diagnosed 4/24/07
PSA 5.5
cancer in 8 of 12 biopsy samples
gleason score 4+4=8; up to 70% pti;
some perineural invasion
surgery performed 5/23/07
clean margins--clean lymph--clean seminal vessel--capsule not penetrated
gleason score upgraded to 9


oldfordlover
Regular Member


Date Joined Apr 2007
Total Posts : 52
   Posted 6/13/2007 8:05 PM (GMT -6)   
one more thing

If you truly have been diagnosed with HE your neurologist must know----you can not under any condition be rapidly removed from prednisone.

Most HE patients (those for whom steroids work) are on high doses of prednisone for a year before they even begin to taper down. Most remain on it at low doses for the rest of their lives. The vary the small dose to the level that keeps it in check.

When my wife's neuro first suspected HE he did the IV pred. and then our local doctor took her off. The HE came back stronger and worse than it was before. Research shows that this is very common.

this time around after the IV pred (solumedral)--my wife went to 60 mg pred for 2 months--we are trying 50 mg. This just happened last week. My wife has had an increase in the headaches--the tremors have increased and she has been in bed for two of those days.

Mayo put out a premier article on the treatment options that you should read--memorize and print out--You might need it in case you go to hospitals or in our case even to educate our new neurologist.

I have several other articles and links if that would be helpful.

HE is so very rare--we have to study it so that you can be your own advocate. If you do not--some doctor or emergency room could kill you or lock you in a psych ward.

Sorry to be so brutal but this is very serious

It is good to find you

See you later

david
Age 50
Diagnosed 4/24/07
PSA 5.5
cancer in 8 of 12 biopsy samples
gleason score 4+4=8; up to 70% pti;
some perineural invasion
surgery performed 5/23/07
clean margins--clean lymph--clean seminal vessel--capsule not penetrated
gleason score upgraded to 9


indygrandma
New Member


Date Joined Jun 2007
Total Posts : 1
   Posted 6/14/2007 9:40 PM (GMT -6)   
Hello,
I believe my husband has Hashimoto's Encephalitis. He has been "tentatively" diagnosed but we have an appointment with Dr. Boeve at Mayo Clinic on July 24. He has headaches, but not migraines, which is kind of odd as he has a history of migraines. He does have the tremors, myoclonus, all on the right side. He was on 64 mg of Medrol for several months when our current neurologist weaned him off because of the side effects. Like David said, it seems to be worse when it comes back. To make even more worse, he's still dealing with some of the steroid side effeccts. This thing is horrible. We know God is good and we know God is in control. That is the only thing getting us through this.

Hawkeye913
New Member


Date Joined Jun 2007
Total Posts : 3
   Posted 6/20/2007 6:52 AM (GMT -6)   

oldford ---

 

Thanks for responding.  I will try the HELPS area as well.  If you don't mind letting me know where I can find some of the articles about HE, that would be great.  It sounds like your wife is much worse off than I, but I can relate to some of the things you said.  I was taken by ambulance to a large, well known, University Hospital and subsequently labeled as a neuropsych case.  I had been pretty dosed up to stop the myoclonus and make the trip easier, but they interviewed me in the ER without my wife (or anyone else).  I hardly remember anything I said.  Oh well.  In December, I had 5 days of IV Solumedrol which helped a lot after the side effects wore off.  My condition apparently was not bad enough as I was not given any oral steroids after.  My neurologist has said that if symptoms return, then we will do the IV again and then do 6-9 months of oral.  I have tried low doses of prednisone (10 mg every other day), with immediate help, but a return of symptoms 4 days later.  Off of that now and having increased myoclonus again.  Will be calling my doctor soon.

 

Anyway --- thanks for taking the time to write and hope to keep in touch.  Give my best to your wife.


oldfordlover
Regular Member


Date Joined Apr 2007
Total Posts : 52
   Posted 6/20/2007 8:47 AM (GMT -6)   
hawkeye

I am not sure if my wife really is worse off than you. Over the last year I have gotten to know people that should make both of us feel blessed. What I have learned is that the effectiveness of the steroids seems to be limited. It seems that they become less effective each time you do a round of doseages.

Start with this page http://thyroid.about.com/cs/hashimotos/a/encephalopathy.htm I have found it helpful.
at the bottom http://thyroid.about.com/gi/dynamic/offsite.htm?zi=1/XJ&sdn=thyroid&cdn=health&tm=2156&f=12&su=p247.2.140.ip_p726.2.152.ip_p284.8.150.ip_&tt=2&bt=0&bts=0&zu=http%3A//www.thyroid-info.com/hashimotos-encephalopathy.htm is referenced.

Also at the bottom of the first reference http://thyroid.about.com/gi/dynamic/offsite.htm?zi=1/XJ&sdn=thyroid&cdn=health&tm=3&f=12&su=p247.2.140.ip_p726.2.152.ip_p284.8.150.ip_&tt=2&bt=0&bts=0&zu=http%3A//www.orgsites.com/fl/hashimotos-encephalopathy-casestudies is linked.
That page has a complete or nearly complete link to resources

One of the cornerstone articles is "Steroid-Responsive Encephalopathy Associated with Thyroid Autoimmunity: Clinical and Laboratory Findings" published by CASTILLO P. R. and the staff at Mayo. You can get access to it at PUBMED where you can register as a guest and get access to it.

As you probably already know--while searching for the research--Mayo references the disease as SREAT (steroid responsive encephalopathy with autoimmune thyroditis). So search also by sreat.

You can link to the HELPS page from Beverly's page. She started the bulletin board although she seldom posts anymore.
Once again I would tell you that they have been very helpful for us. In fact we found someone in Denver that we now talk to and have had lunch with.

If you have trouble feel free to seek me out. As I said I am often on the prostate cancer chat line in the evenings as well you can leave a post for me on HELPS--although others there are much smarter about HE than me

Good luck
Age 50
Diagnosed 4/24/07
PSA 5.5
cancer in 8 of 12 biopsy samples
gleason score 4+4=8; up to 70% pti;
some perineural invasion
surgery performed 5/23/07
clean margins--clean lymph--clean seminal vessel--capsule not penetrated
gleason score upgraded to 9

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