Author Topic: Lithium for Headaches  (Read 7818 times)

Mei Mei

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Lithium for Headaches
« on: September 28, 2010, 05:08:57 pm »
I went to the neurologist today and at the begiinning of the summer he started me on Verapamil.   It gave me serious Insomnia.   After two months he started me on Lyrica and that also gave me insomnia even with sleeping pills.   It's supposed to make you sleepy but not ME!   So today he gave me a prescription for Lithium.   He said the side effects were to damage you kidney and thyroid.   He gave me a script for a blood test and said he'll have to monior my thyroid and kidney while on this.   He said we've tried everything even Gabapentin or Neurontin.  None of them work.   I asked about botox and he said it wouldn't work for me.    He also said that my having mild to moderate sleep apnea was related to my Cluster headaches.   I didn't have headaches for over ten years until my surgery in Jan.   The headache situation was solved.    I feel like we're at a dead end with this post surgical headache.

What to do?

Mei Mei
1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh

lori67

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Re: Lithium for Headaches
« Reply #1 on: September 28, 2010, 05:42:52 pm »
Have you tried having a sleep study to determine if treating the sleep apnea might be a good idea?  If he feels the apnea might be contributing to the headaches, it might be a good idea to treat that to see if the headaches lessen.  Treatment for sleep apnea would be as simple as wearing a CPAP machine at night while you're sleeping which sounds to me like a much better option than taking medication with a long list of side effects.

Hope you find something that works for you!

Lori
Right 3cm AN diagnosed 1/2007.  Translab resection 2/20/07 by Dr. David Kaylie and Dr. Karl Hampf at Baptist Hospital in Nashville.  R side deafness, facial nerve paralysis.  Tarsorraphy and tear duct cauterization 5/2007.  BAHA implant 11/8/07. 7-12 nerve jump 9/26/08.

leapyrtwins

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Re: Lithium for Headaches
« Reply #2 on: September 28, 2010, 07:23:35 pm »
Great idea, Lori.

I'd definitely look into a sleep study, Mei Mei.  I know numerous people with sleep apnea and one of their major complaints is headaches.

If you can solve the sleep issue, you may just be able to also solve the headache issue at the same time.

Good luck,

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Tod

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Re: Lithium for Headaches
« Reply #3 on: September 28, 2010, 08:08:24 pm »
Mei Mei, go for the sleep study. CPAP has done a world of good for me.

Feel free to ask me questions about it.

Tod
Bob the tumor: 4.4cm x 3.9cm x 4.1 cm.
Trans-Lab and Retro-sigmoid at MCV on 2/12/2010.

Removed 90-95% in a 32 hour surgery. Two weeks in ICU.  SSD Left.

http://randomdatablog.com

BAHA implant 1/25/11.

28 Sessions of FSR @ MCV ended 2/9/12.

Mei Mei

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Re: Lithium for Headaches
« Reply #4 on: September 29, 2010, 10:19:09 am »
I did the sleep study about ten years ago and they said it was mild to moderate but didn't recommend the mask.   The doctor told me to lose weight so I lost 55 lbs.  

The neurologist said maybe I need a new sleep study so will ask for that.

Thanks for your suggestions!   Just don't want heavy drugs.   Last month lost the bag that I carried my passport and my father's passport and Medicare and AARP cards.   Don't know where they are.   Now am going to report it.   My mind is always foggy and now having word retrieval problems.
Mei Mei
1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh

Lizard

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Re: Lithium for Headaches
« Reply #5 on: September 30, 2010, 11:10:34 am »
Lithium does not sound like fun, but if it helps the pain it might be your only option now.  Time for a new dr????  Just a thought.
Liz
Left AN 2.5CM,retrosigmoid 11/2008, second surgery to repair CSF leak. 
Headaches began immediately.  Dr. Ducic occipital nerve resection, December 2011!!!!!

"When you come to the end of your rope, tie a knot and hang on"
-Franklin D. Roosevelt

Mei Mei

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Re: Lithium for Headaches
« Reply #6 on: September 30, 2010, 12:33:05 pm »
I agree.   I've tried so many and just don't know what to do.   With this one I have to monitor my kidney and thyroid.   I am now going through Lyrica withdrawal which is no fun.   Shaking and feeling bad.   Haven't started the Lithium.   Need some sleep.   Haven't slept in a few months due to Verapamil and Lyrica.  Hope Lithium doesn't do this too.  He said I might make me jittery and am already jittery from the withdrawal.   Just don't feel good.

Mei Mei
1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh

cin605

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Re: Lithium for Headaches
« Reply #7 on: September 30, 2010, 12:35:33 pm »
Sorry to hear MeiMei... :(
2cm removed retrosig 6/26/08
DartmouthHitchcock medical center lebanon,N.H.
43yrs old

Mei Mei

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Re: Lithium for Headaches
« Reply #8 on: September 30, 2010, 03:08:54 pm »
Thanks, Cindy.  Wishing all a good night's sleep pain free!
Mei Mei
1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh

Lizard

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Re: Lithium for Headaches
« Reply #9 on: October 01, 2010, 10:19:21 am »
Mei Mei,
You just can't win, but just so you know I'm on to a new Dr as well.  Probably the 6th or so since surgery.  I can fill out those forms with my eyes closed  ::)
Let me know how you feel on the lithium.  it should help you sleep if nothing?

Liz
Left AN 2.5CM,retrosigmoid 11/2008, second surgery to repair CSF leak. 
Headaches began immediately.  Dr. Ducic occipital nerve resection, December 2011!!!!!

"When you come to the end of your rope, tie a knot and hang on"
-Franklin D. Roosevelt

Mei Mei

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Re: Lithium for Headaches
« Reply #10 on: October 01, 2010, 01:30:47 pm »
Just started it today.   Lyrica was supposed to make me sleepy but it didn't ... kept me up all night even with Benedryl, Zyrtec and Tylenol PM.  I saw on the 'net that it does this to a lot of patients.  I took Lithium this morning and at noon.  Only two times a day.  Hope I sleep tonight.

Have a good weekend!
Mei Mei
1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh

Kathleen_Mc

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Re: Lithium for Headaches
« Reply #11 on: October 29, 2010, 03:27:12 am »
Mei Mei: I have work in the department of mental health for over 20 years and my 20 anniversary of living post-op AN is fast approaching and I have never heard of using lithium for the treatment of hadaches (post surgical or not), is it helping?
Kathleen
1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)

Mei Mei

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Re: Lithium for Headaches
« Reply #12 on: October 29, 2010, 01:11:44 pm »
No, it's not working at all.   I have continued to get two to three headaches a day and it gave me a hand tremor so he cut the dose in half to half a 300mg pill in the morning and half at night.  I was still getting tremors with that.   I was on it for a month and he took me off of it yesterday with no help for the withdrawal so I decided to take Valerian to help with the withdrawal and Melatonin.   I started having chest pains on the right side 4 days ago and wonder if the Lithium had anything to do with it.   I went to the primary care and he doesn't know what's causing the chest pain.   I also am now having a startle reflex as I'm falling asleep and I've never done that before either.   My arms and legs pop up like a newborn baby does.   It's scary and the doctor thought that was a sleep start.   He wasn't concerned but I am because all these behaviors are new to me.   The month before the Lithium I was on Lyrica for a month and before that Verapamil for a month.   With each change in med, I went through awful withdrawal.  It's like crawling out of your skin.   With the third medication with this doctor he decided to send me to the Pain doctor.   There wasn't an appt till Jan 14th, so he spoke personnally with the doctor about me instead of the scheduler and the doctor said he would have them call me and schedule an injection appointment for a nerve block and I am to meet him not in the office but the operating room.   I've already had three nerve blocks and they weren't scheduled in the OR but in the office.   They said they are going to sedate me.  It's a big difference from the nerve blocks I had before that didn't work.   I hope this time it works to block my headaches as I've paid my dues trying all the drugs and it's proof that they don't work.   There has to be a better way for AN surgery patients to get postsurgical care rather than by experimentation.   I wouldn't want to wish this on any future patient.

Thanks for asking the question and feel free to write more.
Sincerely,
Mei Mei
1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh

Kathleen_Mc

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Re: Lithium for Headaches
« Reply #13 on: November 01, 2010, 09:42:55 pm »
Mei Mei: I hope the nerve blocks help.
I personally haven't taken an aggressive medical approach to my headaches, I figured out long ago that the only thing that really works for me is to lie down in the dark, maybe take some plain Tylenol or Advil and just stay like that until it goes away,,,,,hence since having a family it hasn't always been possible and I run around with a massive headache most days. I am reluctant to take anything stronger, I can't be sedated all the time and I know over time I would just need stronger and stronger drugs (that's what happened to me pre-op and it was horrible being stoned all the time).
In the past I did try Inderal and Amitriptyline to prevent them but the side effects were intolerable. I also tried tradition migraine meds with limited effects. (Imitrex, Ergot preparations).
I have often wondered if acupuncture would help but haven't tried it.
Let us know how this new block procedure goes.
Kathleen
1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)

Mei Mei

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Re: Lithium for Headaches
« Reply #14 on: November 02, 2010, 03:41:45 pm »
Thanks, Kathleen.   Nothing's worked for me so far.  All the drugs and PT and accupuncture just don't prevent the headaches.   Check back after my injection on Nov. 23 and I'll let you know how it goes and how the weeks that follow go.
Mei Mei
1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh