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Anyone else have problems with their legs + CH ?


Tony Only
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It's my 18th year with CH, been episodic so far (summers) but now I seem to have turned chronic. My legs have always been bad during attack episodes and I have always blamed cortison but now I am not so sure anymore. It's been a while since I have used it and my legs just ain't getting better. It's hard to describe, it's not really pain (if compared to an attack) more like constant little cramps 24/7 on the back of my legs and calfs. It's hard to get my legs straight. And this condition gets worse during the day, by nighttime it's hard to sleep because the way they feel.

Could Verapamil or Imitrex cause this ? Or maybe some of my vitamins, magnesium, d3, calcium ?

I'm sure this is CH related and just curious if anyone else has or has had same problems.

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Just speaking from my experience as a former EMT, it could be the Magnesium and calcium. These minerals are electrolytes. Calcium levels have a pretty strong correlation to muscle activity. Too much calcium can cause twitching (medically referred to as: myoclonic jerks) and sometimes cramps.

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Just speaking from my experience as a former EMT, it could be the Magnesium and calcium. These minerals are electrolytes. Calcium levels have a pretty strong correlation to muscle activity. Too much calcium can cause twitching (medically referred to as: myoclonic jerks) and sometimes cramps. 

My usual verapamil dose has been 720mg and in the last years I have thought of it as a cause for real bad cramps on my left leg and magnesium has been added to help with this, have to try leaving it and see what happens. Calcium is because of the bone loss (don't know the correct word in english) caused by cortison so that will be a tougher one to drop but have to try. Thanks.

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Yes I've had the leg cramps and the restless legs.

This tends to be a symptom of magnesium deficiency.

Magnesium oxide is cheap and crude and it works for some people. Not me. Makes it worse for me. I need a magnesium citrate or chelate.

So you may have to do a little experimentation there - maybe it's the form of magnesium you're taking that's complicating things, or maybe you need to adjust your magnesium to calcium ratio?

Unfortunately for us combo supplements tend to contain more calcium than magnesium and next thing you know, crampville USA.  :P

It might be a matter of just adding some extra magnesium pills to your current supplement to counterbalance all that calcium.

Taking magnesium and calcium in a 4 to 1 ratio or so (mostly magnesium) after dinner or before bed could really do the trick.

If not you should probably try a different form.

Here's to some crampless, rested legs for you TripleT.  8-)

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T3,

I agree with Bejeeber. A 4:1 ratio of Mag to Cal should help quite a bit. Just remember to drink lots of water. Electrolyte imbalance not only refers to the balance between water soluble minerals in the body but also to those minerals and water content (hydration). What would normally be considered nominal dehydration in a normal person (someone who doesnt take mineral supplements), is easily compounded in someone who takes mineral supplements. So my advice (which is far from actual medical advice) is to maintain your current usage or adjust to attain that optimum 4:1 ratio, and pound lots of water. Hope this helpe T3

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Some people react quite severely to cortisone (I'm one of them; my daughter is another), often with intense muscle tightness and deep joint pain; some people have lesser reactions along the same lines.  Once again, I've only had one doctor who actually accepted that this could happen, even after it happened, and that includes many who administered cortisone on a nearly daily basis.   Drinking a lot-- lots and lots -- of water has helped me, but I never knew if I was actually washing the cortisone out of my system (didn't care, either: in my case, the treatment was worse than the condition, but I'm not talking about CH).

This may be completely trivial and unresponsive to anyone's situation here, but I also have restless leg, and I do find that dedicated stretching, particularly of hamstrings, gives me a lot of relief.  I never go to bed without a good half-hour of leg stretches, and I try to do them every morning, too.

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Oh yeah I agree with the water thing too - And my wife and I both swear we can really tell a difference with leg cramps'n junk when we drink elctrloyte water, especially after exercising.

We like good 'ol good cheap Dasani, although the minerals  added (magnesium sulfate, potassium chloride) are officially just there for taste.

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Thanks for all the answers !  :)

My magnesium was oxide, bought citrate. But when I read and saw stuff about both magnesium and calcium it first seemed I might have too much one or the other or some kind of total imbalance going on. Google "Deadly Calcium" it's a documentary, I won't be taking calcium for a while after seeing that.

Anyways, I was almost 9 months full in the most horrible cluster headache pain cycle in my life, was already diagnosed as chronic.

I left calcium away completely. Been pain free for over 3 days (haven't had any break in 9 months!) now. I'm just like WTF. Cut down magnesium half of what I have used to take.

Now I'm scared to do any changes since this is completely amazing that the pain is gone. I always try really hard to "solve out" why my cycles end. Now there's just too many factors to figure this one out, but I am not complaining.

I have kept my apartment's ventilation windows wide open 24/7 about the same time I've been pain free (though it's -10´C in Finland  :o ) and I would bet this is the one.

Never, ever has my cycle ended like this and I had almost given up hope and admitted to being chronic.

Got my life back. Even for just 3 days now !

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The fact your CH's have gotten better doesn't surprise me. I would have recommended Potassium, like DG. I dislike gatorade, so I do V8. Pickle juice also helps leg cramps, too.

I thought it was some transvestite that ate too many crackers.

I laughed so hard at this. I'd like to meet that queen. :D

I know for a fact, too much b12 for me triggers some GODAWFUL clusters. My hematologist had me on the shots... I took them, then started getting the most horrible headaches from them. My body said no.

Too many supplements/vitamins can be just as dangerous/harmful as not enough.

Glad you're pain free!

Mystina

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Norway here, not that far away. Been visiting Finland, with the "Wasa Queen". :)

Been on that ride as well  :)

Well, I've been a test bunny with magnesium etc. but legs ain't getting better, I'm thinking something to do with blood circulation and Verapamil.

Got hit 2 times yesterday, still - 4 PF days was something amazing.

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