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Cluster headaches or trigeminal neuralgia? (Read 5583 times)

Diamond Lucidity

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Cluster headaches or trigeminal neuralgia?
May 22^nd, 2012 at 3:43am

I don't think I've been on here since July 2010. At that time I thought I was able to have conversations with people that shared my pain and had understanding. Quickly, I realized people were doubting my diagnosis--just like some family and friends that don't want to hear about any illnesses. I went to the neurologist today as I have every 4 to 6 months for years. The pain is caused by dilation of blood vessels causing pressure on the trigeminal nerve. He said it really stirs up the trigeminal nerve. At one point they suspected trigeminal neuralgia, but for a few years now, the neurologist says its cluster headaches. So, what ever he wants to label it. I felt this site showed disbelief to several people to the matter of having cluster headaches- like they that had been on here a long time were the only true sufferers. I thought I would give the site another try after this time has passed to see if they would be anymore accepting of newcomers that desperately are looking for help and support. In an update-- I'm doing pretty well on Verapamil. I was retired on disability due to lumbar back surgery, cervical disc fusion, Grave's disease, neuropathy, spondylosis, previous foot surgery and rotater cuff surgery. And the cluster headaches or trigemial neuralgia. So I would like to give the site another try.

From where does it come and where does it go????????

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Diamond Lucidity

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Re: Cluster headaches or trigeminal neuralgia?
Reply #1 - May 22^nd, 2012 at 4:05am

I forgot to mention in January, I had alot of problems with vertigo. The neurologist sent me to Ear, nose, throat specialst, that did a test on me that was the worst torture [other than cluster headaches] in my life. They shot hot water in my ears. Then they normally shoot cold water in your ears, but since they didn't get the response they needed they said they had to use ice water in my ears. I screamed and cried and begged them to stop. It was called nystygmus test, if thats spelled right. So that diagnosis turned out to be peripheral vestibular dysfunction. They said the most important thing was to keep the cluster headaches under control with medication to avoid the dizziness. I felt like I was tortured in some kind of science or military test. I am a 54 year old, 110 pound woman and can't take much more.

From where does it come and where does it go????????

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BarbaraD

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Re: Cluster headaches or trigeminal neuralgia?
Reply #2 - May 22^nd, 2012 at 7:14am

Diamond,

Welcome to the family. Your symptoms bring up some interestings things to me. I'm suffering from vertigo right now (I'm a 68 year old woman 110 pounds so we're in the same boat except you could be my kid - I'm OLD).

Over the years I've had the "waterboarding" with both hot and cold and I'll agree - it ain't a fun time. One ENT guy got it pretty well cleared up with niacin, antivert and valium and for years I didn't have the vertigo, but lately (the past few months) I've been walking into walls and having trouble keeping my balance. I thought it was just me...

The way I understand TN -it hits and then doesn't last that long CH stays longer. (maybe that's too simple, but I never understood the difference - they both hurt).

Anyhow I'd be interested in what they're doing to treat your vertigo. I really don't like having to hold on to things just to walk around the house and I sure don't want to give up driving.

Welcome back to Clusterville... and don't take things personally.. We sometimes joke and it doesn't come out just right, but we mean well.. Hope we can help some this time.

And don't forget -- we all are suffering, and we DO understand.. Kiss

What don't kill ya, Makes ya stronger!

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wimsey1

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Re: Cluster headaches or trigeminal neuralgia?
Reply #3 - May 22^nd, 2012 at 7:55am

Hi Diamond. I'm not sure what you're experience was but often we will not so much doubt a diagnosis as doubt a self-diagnosis. Not saying that's what you did but I can say we are familiar with the phrase "we are all different." while we share a great deal in common concerning the manner and wiles of the beastie, we recognize CHs come in a maddening variety of symptoms.

As for the TN. I've been diagnosed with both CHs and TN. The pain, for me, is quite different even though the attacks come pretty much at the same time. The TN can show up all by itself, but rarely. Treatment for both appears to be about the same. As weird as this sounds, I'd rather have a cluster attack than a TN attack, they're that bad. O2 in high flow (25lpm+) and a good nonrebreather mask has knockied out most TN symptoms leaving me to deal with the CHs by themselves. No picnic, but more manageable. Blessings. lance

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Batch

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Re: Cluster headaches or trigeminal neuralgia?
Reply #4 - May 22^nd, 2012 at 10:07pm

Hey Diamond...

Welcome aboard CH.com...

Your post caught my attention... Cluster Headache, Trigeminal Neuralgia and Graves' Disease add up to a perfect storm...

CH or TN are bad enough by themselves... Having Grave's on top of both of these two painful headache disorders makes them even worse... Moreover, trying to treat them if you have Graves, is a difficult task at best...

I've been tracking the progress of CH'ers here at CH.com who have posted that they've started the anti-inflammatory regimen with 10,000 IU/day vitamin D3. One of the comorbid conditions found with cluster headache is Graves' disease...

Hyperthyroidism will make treating cluster headaches problematic... Moreover, treatments for Graves' including removal of the thyroid, doping with radioactive iodine, or use of suppressive medications can easily lead to a thyroid and parathyroid hormone imbalance...

As both the thyroid and parathyroid hormones play essential roles in vitamin D3 and calcium homeostasis, an imbalance in one or both of these hormones can be troublesome for CH'ers.

I'm not a doctor so it's best you see your endocrinologist as this problem and it's association with cluster headache is something neurologists are not trained to handle.

When you see your endocrinologist, ask for the lab test for 25-Hydroxyvitamin D, a.k.a. 25(OH)D, the serum level metabolite of vitamin D3 along with tests for thyroid and parathyroid hormone levels.

The normal reference range for 25(OH)D is 30 to 100 ng/mL, but we have CH'ers with active CH reporting 25(OH)D serum concentrations as high as 55 and 61 ng/mL.

The exciting news is CH'ers who have gone pain free of their CH while taking the anti-inflammatory regimen with 10,000 IU/day or more vitamin D3 and then gone in for this lab test, have all reported serum concentrations of 25(OH)D in a range from 60 to 110 ng/mL.

To date from the information I've gathered since December of 2010, 105 out of the 140 CH'ers who started this regimen have experienced a significant reduction in the frequency and severity of their CH attacks... Most of them have gone pain free within three weeks after starting this regimen.

That's a raw efficacy of 75% and this leads me to say that the majority of people with cluster headache suffer needlessly from this terribly painful disorder due to a vitamin D3 deficiency.

Migraineurs and trigeminal neuralgia sufferers also respond to this regimen... Take a look at the following link and post # 798 from Akina near the end of the page... I think you'll find a fellow headache sufferer with a condition similar to TN who found relief taking the anti-inflammatory regimen with vitamin D3.

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

Take care and please keep us posted.

V/R, Batch

« Last Edit: May 22^nd, 2012 at 10:19pm by Batch »

You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there

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Diamond Lucidity

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Re: Cluster headaches or trigeminal neuralgia?
Reply #5 - May 23^rd, 2012 at 12:11am

Well, sorry I can't figure out how to answer each person. To Barbara---the neurologist tested the vertigo first, then sent me to the ENT. ENT did the torture test,then gave me exercises to do that basically make you dizzy to "train your brain" to recover quickly from dizziness. Sounds crazy to be dizzy and purposely make yourself dizzy! ENT said most important was to keep cluster headaches under control. At first they thought the dizziness was from my neck surgery, so many different things can cause it, so you would have to find out the reason. Mine turned out to be from the ears, vestibular dysfunction.

« Last Edit: May 23^rd, 2012 at 12:12am by Diamond Lucidity »

From where does it come and where does it go????????

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Diamond Lucidity

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Re: Cluster headaches or trigeminal neuralgia?
Reply #6 - May 23^rd, 2012 at 12:36am

To answer Batch-- I had the radioactive iodine several years ago for the Grave's disease. Now I'm on Levoxyl. I see the endocrinologist every 6 to 9 months having lab work done the week before each time checking TSH and T4. They have ordered more labs at times, but I will definitely ask about the labs you mentioned. Thank you for the information. These labs have been in the normal range for quite some time. I do have some slight problems with my eyes that the opthamalogist has checked. I think it's called proptosis, something like that, from the Grave's disease. I take Verapamil for the cluster headaches and Lyrica for the spondylosis pain in neck and back. I'm supposed to set up appointment for diagnostic test for nerve ablation in lower back. And guess what--"I don't LOOK sick" , that's why people don't understand. I'm very glad I don't LOOK sick. I'm sure alot have heard this before.

From where does it come and where does it go????????

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Batch

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Bremerton, WA
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Re: Cluster headaches or trigeminal neuralgia?
Reply #7 - May 23^rd, 2012 at 1:03am

Hey Diamond,

Thanks for the reply... If you're not taking vitamin D3 with calcium and the cofactors, magnesium, vitamin K2, zinc, and boron... you should be... It works wonders.

My wife has been on the anti-inflammatory regimen since Dec 2010 taking 15,000 IU/day vitamin D3 and loves it... She was a chronic migraineru with three to five day attacks coming like clockwork each month... None since starting this regimen.

She feels younger, looks younger and has more energy than I've seen in 20 years. She bounces around the house and yard like a kid again... She also kicked the heck out of 75 last Christmas... Go figure...

The attached pdf file by Dr. Peter Lewis, M.D., an Integrative physician in Australia provides a good explanation of vitamin D3 and what happens if you're deficient... I've been exchanging information on the relationship between cluster headache and vitamin D3 therapy with Peter for nearly a year... He treats patients with vitamin D3 deficiency on a routine basis.

Take care and please keep us posted...

V/R, Batch

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

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Diamond Lucidity CH.com Junior Offline I Love CH.com! Posts: 51 Indiana Gender:	Re: Cluster headaches or trigeminal neuralgia? Reply #8 - May 26^th, 2012 at 2:19am Thank you for all the information!!
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