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Kimbrit

Opinions needed re: Carbamazepine (Tegretol)

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Hi Everybody:  I am new to this group.  I have suffered with CHs for about 5 years, but didn't realize exactly what they were until last year.  (I was first diagnosed with trigeminal neuralgia).  My CHs are episodic, starting in July and lasting until the end of October.  My neurologist wants me to start Carbamazepine (generic of Tegretol).  I am apprehensive due to the possible side effects.  I am prone to panic attacks, and have a low-dose prescription of Xanax if needed (I average 1-2 pills per month, during times of stress.  Each pill is .025 mg).  I have read mixed reviews for Carbamazepine.  My concern is having panic attacks while on Carbamazepine, as well as the other possible side effects (drowsiness, not being able to concentrate).  I feel there may be a better option as to what I could try.  Right now the CHs are about every-other day, 2-3 episodes between 8:00 p.m. - 11:00 p.m., with the pain from a 5 with the first CH, to a 10 with the third CH (unbearable!!).  Any advice / suggestions will be greatly appreciated!  Thank you!  

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You probably were given gabapentin or something like it when your diagnosis was TN??  Maybe that helped some, and that's why your doctor is prescribing another anti-convulsant??  In any event, carbamazepine is way down the list of recommended treatments.  You should read the Goadsby article here for a a sense of pharmaceutical treatment options: https://clusterbusters.org/medical-research-reports-studies-case-reports-links/

Standard medical CH prescription would be a preventive such as verapamil, and OXYGEN as an abortive, with perhaps a triptan, such as injectable or nasal-spray sumatriptan, for breakout attacks.  Most folks here will tell you that oxygen -- no side effects, highly effective at stopping attacks -- is the most important thing to have.  Way too many doctors fail to prescribe it, for God-knows-what reasons.  You need to either get that oxygen prescription by whatever means you can, as soon as you can, or seriously consider setting up your own system using welding oxygen, as many do.

Strongly recommend that you start the D3 regimen: https://clusterbusters.org/forums/topic/1308-d3-regimen/

An energy shot such as 5-Hour Energy, drunk down quickly at the first sign of an attack, can abort an attack or at least reduce its severity.

Others will probably suggest other things.

Consider busting, which you can read about in the numbered files in the "ClusterBuster Files" section of this forum.

 

 

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Kimbrit,

Welcome to Clusterbusters.  We know what you've been going through and the good news is it doesn't need to be that way...  There are many "old hands" experienced in controlling CH here to help you.

Your concerns about taking Carbamazepine are valid...Why neurologists prescribe antiepileptics for cluster headache is baffling... It is not among the Standards of Care recommended interventions (prophylaxis) for cluster headache (CH).

The odds are very high you are vitamin D3 deficient and that deficiency is contributing to the frequency, severity and duration of your episodic CH.  I have an online survey that's been running since December of 2011 of CHers taking the anti-inflammatory regimen to prevent their CH.  This regimen contains 10,000 IU/day vitamin D3, Omega-3 Fish Oil and the vitamin D3 conutrients: magnesium, zinc, boron, vitamin A (retinol), vitamin B complex and vitamin K2 complex.  The first part of this survey requests CHers to see their PCP or neurologist to get the lab test of their 25(OH)D, the first metabolite of vitamin D3 that's used to measure its status.  The normal reference range for 25(OH)D is 30 to 100 ng/mL.  As of last March, 2017, 215 CHers have completed and submitted their surveys.  The following normal distribution chart illustrates their baseline 25(OH)D serum concentrations.

nAwMRaU.jpg

Better than 80% of CHers taking the anti-inflammatory regimen experienced a significant reduction in the frequency of their CH from an average of 3 CH/day down to 3 CH/week in the first 30 days.  Better than 50% of CHers taking this regimen experienced a complete and lasting cessation of CH symptoms as long as they remain on this regimen.

You can download the latest version of the anti-inflammatory regimen CH preventative treatment protocol at the following link.

  Be sure to share a copy with your PCP or neurologist.  That way you’ll both singing from the same sheet music when you ask for the 25(OH)D lab test.

 

http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708

 

Henry Lahore, the brains and brawn behind the VitaminDWiki website posted

this link for me on 21 January, 2017.  As of 21 July, readers have downloaded 2440 copies of this treatment protocol...
 

You can also scan the following QR code with your smart phone and it will download a pdf copy of the treatment protocol to your phone.  The QR Scanner app is free.  It takes less than 10 seconds to download and install.

LkufLye.jpg

This is a very safe regimen of vitamins and minerals.  There have not been any adverse reactions reported that required medical attention.  On the contrary, there's a long list of health benefits from taking this regimen over and above preventing your CH.

Take care and please keep us posted.

V/R, Batch

 

 

 

 

 

 

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Thank you CHfather!  I have read previous replies from you, and you always have excellent suggestions.  I will continue to do further research, as well as look into the D3 regimen, as I know you have suggested that to others.  After being on this site, my situation does not seem as dire as I had previous thought.  Thank you again, I look forward to trying your suggestions!

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My daughter's initial diagnosis was TN, also.  The "good" thing about that diagnosis was that one could imagine that the microvascular decompression surgery might be a big help.  But in my view it's a very mediocre doctor who confuses TN with CH.

Oxygen, oxygen, oxygen.  (And D3 and maybe some other things.)

 

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Hi Kimbrit and welcome to the community!!

I was prescribed and have taken Tegretal.....the side effects are horrendous and it did nothing to help clusters for me (it's a commonly prescribed drug for tic de la rue which is what this particular doc dx'd me)

DD

Edited to add: what Chf said....high flow oxygen is the best thing that ever happened for clusterheads

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