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Cluster Headache Help and Support >> Cluster Headache Specific >> Changes in vision?
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Message started by AbbysMom on Oct 7th, 2011 at 11:12am

Title: Changes in vision?
Post by AbbysMom on Oct 7th, 2011 at 11:12am
I looked around but didn't see anything else posted on this.  Has anyone else noticed a decline in their vision either as a result of the CH's or a results of meds?  For the past month or so my vision has declined enough to be noticeable.  Things I used to be able to see clearly are blurry.  I went to the optometrist and got a new RX for my glasses and had an eye exam.  He said my eyes were healthy w/ no sign of deterioration.  The only thing I could think of is that I'm in a cycle right now and have started Elavil and Sumavel DosePro. Anyone else have vision changes during a cycle? I'm wondering if my vision will return to normal when this cycle ends. 

Title: Re: Changes in vision?
Post by Lobster on Oct 7th, 2011 at 11:37am
My near vision has gone to shit this cycle.  I feel as though I now need bifocals.  I am resisting enlarging the font size on my phone apps.    Hoping it clears up when the cycle goes bye-bye.

Doing loads of Imitrex. 

Title: Re: Changes in vision?
Post by AbbysMom on Oct 7th, 2011 at 11:47am
Yeah I've been using a lot of Sumavel (same med as imitrex).  Hmm...I wonder if that has something to do with it.

Title: Re: Changes in vision?
Post by Guiseppi on Oct 7th, 2011 at 3:01pm
I used imitrex in prior cycles and didn't notice any decrease in vision. I'm 51 and wearing progressives now, but pretty well parralleling my siblings in rate of loss.

Joe

Title: Re: Changes in vision?
Post by ttnolan on Oct 8th, 2011 at 1:17am
Yes, I notice vision changes from meds mainly... but the CH affects it also.

Title: Re: Changes in vision?
Post by Batch on Oct 8th, 2011 at 3:44pm
Nicole,

You've brought up an important point about the medications we take to control our cluster headaches. 

We frequently concentrate on a narrow list of medications that we and our neurologists or GPs choose as best suited to treat the obvious painful symptoms of our condition.  All too often we do this without a complete understanding or regard for our overall well being or the impact of obvious and some not so obvious side effects they carry.

Sumatriptan succinate (imitrex, imigran) and most of the triptan family of abortives prescribed as an acute treatment to abort our cluster headache attacks carry a long list of known side effects.  If you'll check out the link for this medication on RxList below,

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you'll find the following statement:

Stop using sumatriptan and call your doctor if you have
a serious side effect such as:

* chest pain or heavy feeling, pain spreading to the
   arm or shoulder, nausea, sweating, general ill feeling;
* sudden numbness or weakness, especially on one
   side of the body;
* sudden headache, confusion, problems with vision,
   speech, or balance;
* fast heart rate, agitation, muscle stiffness, hallucinations,
   lack of coordination, with nausea, vomiting, or diarrhea;
* sudden and severe stomach pain and bloody diarrhea;
* seizure (convulsions); or
* numbness or tingling and a pale or blue-colored
   appearance in your fingers or toes.

You'll find a similar litany of cautions, warnings, and side effects for verapamil, the leading cluster headache preventative.

I'm not suggesting you stop taking either of these medications.  They're both listed in the standards of care in the treatment of cluster headache as having proven efficacy.

What I do suggest is you look at the risk-reward ratio.  Contrast the potential for a favorable therapeutic response to any medication with its potential to cause serious side effects. 

For example, is a high probability of efficacy in aborting cluster headaches with one of the triptans worth an equally high probability of occurrence of one or more of the listed side effects of triptans such as heaviness in the chest, fast heartbeat or vision problems?

If you don't like the odds, look for a less invasive alternative or a combination with another abortive that would lower your exposure to triptans.

Oxygen therapy is the obvious choice.  It's safe, it costs no more than $1.50/abort, it has no contraindications or adverse side effects, and it can be very effective at flow rates of 25 liters/minute and higher.  At these flow rates most CH'ers wouldn't need to resort to triptan-based abortives except under extreme conditions.

Even oxygen therapy at 15 liters/minute would produce enough effective aborts to cut exposure to triptan-based abortives by better than 50% for most CH'ers.

There's a similar alternative for verapamil the leading CH preventative.  It's a combination of vitamin D3 and Omega 3 Fish Oil.  You'll need to take additional calcium, magnesium and zinc to maintain normal calcium levels and enable the vitamin D3 to be metabolized properly, but there are no side effects for any of these over the counter supplements.

Unlike verapamil, this regimen is actually healthy for you while preventing cluster headaches.  So far, CH'ers here at CH.com are proving it to be better than 75% effective.  Verapamil has at best an efficacy of 50% and that figure comes from the Cluster Headache Survey 1134 of us took in 2008

Moreover, in taking this regimen, you're actually giving your body what it needs to help prevent cluster headaches.  In fact, as this regimen has no real contraindications or adverse side effects, it can be taken with verapamil.  That's a lot better than just taking verapamil with its known side effects.

Of course you'll need to see your neurologist or PCP about these two alternatives...  When you do, ask for the blood test for 25-Hydroxyvitamin D, a.k.a. 25(OH)D. This is the serum level metabolite of vitamin D3.  The optimum reference value for 25(OH)D is 125-200 nmol/L (50-80 ng/mL). Anything less than 100 nmol/L is deficient.

Data we've collected from CH'ers who have gone pain free using this regimen and gone in for the 25(OH)D test, indicate the optimum therapeutic range of 25(OH)D for CH'ers is 150-225 nmol/L (60-90 ng/mL).

If you think I'm blowing smoke about this regimen, there's an easy way to prove it... See your doctor and ask for the 25(OH)D test...  CH'ers with active CH who have gone in for this test before starting this regimen have tested around 100 nmol/L or much less.

If you want to read more about vitamin D3, check out the following link:

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Take care,

V/R, Batch

Title: Re: Changes in vision?
Post by AubanBird on Oct 8th, 2011 at 6:23pm
i can vouch for the D3/fish oil regimine.  i ran out of fish oil, calcium and zinc, but the D3 and a good diet still seem to be helping a lot.  of course, im still taking verapamil.

whatever the case, i get hit a lot worse when i am stuck away from my D3 for a while. 

if i could find some where im at that arent in gel form i could probably take them with me on patrols.  extreme heat has a tendancy to melt the gel caps... :(

Title: Re: Changes in vision?
Post by Mike NZ on Oct 8th, 2011 at 7:14pm

AubanBird wrote on Oct 8th, 2011 at 6:23pm:
if i could find some where im at that arent in gel form i could probably take them with me on patrols.  extreme heat has a tendancy to melt the gel caps... :(


When over in the UK in August I picked up some from Superdrug that were in solid form.

Do you know anyone over there who can send you some?

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