Okay, so the last time I did much more than lurk on this board I got some criticism that I should stop looking for new treatments and deal.  So I have been somewhat hesitant to post, but I found something that has put me not quite into remission but very much improved.

I have been one of those chronics who has been completely disabled for more than 3 years. I had an average of 8 hits a day that were a Kip 7-10. Except for some time on dopeymax I rarely slept for more than 40 minutes at a time, was always exhausted, and I had an intractable migraine to boot. I really didn't understand how anyone could work with chronic CH because I felt so bad all of the time. I simply couldn't function.

Well, I mentioned this to my new PCP in Colorado back in January and she said my thyroid TSH level was 3.2.  That signaled an underactive thyroid within the new guidelines.  New guideline= anything over 3 is underactive.  Old guideline= anything over 5 is underactive. She also said there were some new studies that showed a correlation between migraine and new persistant daily headache with underactive thyroid (even subclinical underactive thyroid) and while she wasn't sure it would help me or CH, I should be able to sleep better.

So I went on Levothyroxin ($4 generic at Walmart!) and in about a month I started to feel dramatically different. I sleep much better.  Maybe not 8 hours in a row, but several hours at a time at least.  The previously intractable migraine is gone. My CH attacks are usually Kip 5's or phantoms, and I've only had 2 Kip-8's in the last 2 weeks. I've gone back to work. 

I'm the type whom Imi and Oxygen didn't help, so I was stuck with Lortab 10's (there was some discussion of methadone or surgery, but I refused).  I have only felt the need to take one painkiller in the last 2 months!

Now, I've been on this since January and have been feeling better ever since, so I don't think this is a fluke. I think that the med helps me sleep better and when I sleep better I have less hits, so it's an indirect effect.  This is because the nights that I didn't sleep well  I felt much worse the next day.  Prior to being on this med I never got enough sleep to notice if lack of sleep was a trigger for me or not. Other triggers (solvent smells, rapidly dropping barometer, rapid rise in temperature) still affect me but the attack is not as bad as previous ones were.

My lesson is that my CH was greatly exacerbated by my underactive thyroid.  Now CH is something I can easily live with.

So if you are one of those chronics who identifies with my story  (I know there are a few of you out there), have your thyroid tested and ASK what your TSH level is because some doctors still use the old guideline. If your number is 3 or higher, ask for Levothyroxin. No side effects, no safety issues, the only thing I have noticed is that I am slightly more sensitive to caffeine than I used to be, which is a plus in my book!

I have to say that it's a little odd that you're sleeping better because one of the side effects of Levothyroxin is insomnia, lol.

If it is helping your CH though, that is great!

Gary can relate, because that's about where his are (averages a little over 7 hits a day) and he's never pain free, though the "background" all-the-time shadowing hasn't been diagnosed as a migraine.

All that said, he's had lots of blood work done in the past couple of months because he's also had these crazy fever episodes.  So thank you for posting this, because supposedly nothing was red-flagged on the thyroid (or pituitary), but it's worth a re-look!

I'm so glad you're getting so much relief!!!!!!!!!!!!!!!!!!!!!

Laurie

pattik wrote on Dec 9^th, 2008 at 3:31pm:


Yes, absolutely. Some research has shown that most clusterheads have an 'energetic deficit' of the brain - in your case, that could be partly from a thyroid deficiency.

There was one research article titled "Deficient energy metabolism is associated with low free magnesium in the brains of patients with migraine and cluster headache" ... magnesium wasn't the cause of the energy deficit, but it probably makes things worse. 

My wife's migraines were reduced by 90% when she corrected low thyroid hormone levels (she has autoimmune thyroiditis and eliminating all wheat made a huge difference).   

Monty- that's really interesting...years before I was diagnosed with CH, I was diagnosed with severe ADD, and I finally started treating it with meds this summer...something about ADD is that they now know that the ADD brain, even when on medication, uses glucose at an 8% lower rate than normal brains and is "understimulated";  also,  ADD belongs to a group of disorders known as the Affective Spectrum Disorders:

From Wikipedia,

The affective spectrum is a grouping of related psychiatric and medical disorders which may accompany bipolar, unipolar, and schizoaffective disorders at statistically higher rates than would normally be expected. These disorders are identified by a common positive response to the same types of pharmacologic treatments. They also aggregate strongly in families and may therefore share common heritable underlying physiologic anomalies.

Affective spectrum disorders include:

    * Attention-deficit hyperactivity disorder
    * Bipolar disorder
    * Body dysmorphic disorder
    * Bulimia nervosa and other eating disorders
    * Cataplexy
    * Dysthymia
    * Fibromyalgia
    * General anxiety disorder
    * Hypersexuality
    * Irritable Bowel Syndrome
    * Impulse-control disorders
    * Kleptomania
    * Migraine
    * Major Depressive Disorder
    * Narcolepsy
    * Obsessive-compulsive disorder
    * Panic disorder
    * Posttraumatic stress disorder
    * Premenstrual dysphoric disorder
    * Social phobia

The following may also be part of the spectrum accompanying affective disorders[citation needed].

    * Chronic pain
    * Intermittent explosive disorder
    * Pathological gambling
    * Personality disorder
    * Pyromania
    * Substance abuse and addiction (includes alcoholism)
    * Trichotillomania

interesting.....

An interesting thread all the way around!

Did have doc take a re-look at Gary's TSH - it was 2.9, so not the culprit.  But still glad you posted, thanks!

As to the other question, from my mom's experience, I know there's a relationship between hypothyroidism and allergies - so it seems strange and counter-intuitive that fixing that situation would increase your allergic reactions.  ???????  But clearly, there is a link between the thyroid and histamine, so it should be worth researching.

Laurie

Well I had a negative blood test a few years back, although since have been told that blood tests falsely negative a large percentage of the time and that the only acceptable way to diagnose celiac is to biopsy after a 3-week gluten challenge (binge).  Since the flour in a piece of licorice now seems to send me into allergic reaction I am hesitant to do any challenge. I don't suppose it makes a difference anyway as the only treatment for celiac is to avoid gluten, which I intend on doing.

I realize this is off topic, but what symptoms of allergy did she have?

Katherinecm wrote on Dec 14^th, 2008 at 11:33pm:


She was experiencing constant headaches and terrible wheezing.  No hives, and her throat wouldn't close up, but she was also having trouble with stomach pain and diarrhea.  I don't know what the symptoms associated with the thyroid problem were specifically (I was off at college, so my knowledge of what she was going through was from phone conversations).  She actually had her thyroid removed (you know, I'm going to ask her about that), and then went on a complete elimination diet.  For about 9 months she ate just one food at a time (with a gap of at least 4 hours between each item) and logged her reactions to it.  Discovered she was gluten and lactose intolerant, and allergic to or intolerant of every member of the nightshade family.  

She went completely gluten free (and obviously doesn't eat potatoes, tomatoes, eggplant or peppers).  I don't know how it all works, but she can eat yogurt (as long as it has live cultures).  The new diet fixed all the headaches, the stomach and bowel problems.  But she still has asthma, which developed as an adult around the same time as the thryoid problem came to light, and she gets frequent sinus infections.

Laurie