Severe headaches for 2 mths ...help.please.

Emmarose47

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Hi could people give me their experience / knowledge on headaches please ..
Most days I have the following symptoms in reading in severity ..
Pain / heaviness across forehead , temple neuralgia which at worst feelings like screw drivers , left side radiating nerve pain to above ear ending in a large area of numb, thud denseness ...
I've long long been a headache suffer but this is bad .. I've had similar with the neuralgia in the past associated with sinus stuff ( sinus seem fine at mo ..
Doc.thinks stress related

She suggested beta blocker.of which I'm v reluctant ....
I had amitriptyline in past but was sedating ... However it did work .
I can't go on like this ...
 

heapsreal

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Hi could people give me their experience / knowledge on headaches please ..
Most days I have the following symptoms in reading in severity ..
Pain / heaviness across forehead , temple neuralgia which at worst feelings like screw drivers , left side radiating nerve pain to above ear ending in a large area of numb, thud denseness ...
I've long long been a headache suffer but this is bad .. I've had similar with the neuralgia in the past associated with sinus stuff ( sinus seem fine at mo ..
Doc.thinks stress related

She suggested beta blocker.of which I'm v reluctant ....
I had amitriptyline in past but was sedating ... However it did work .
I can't go on like this ...
Besides pain killers, headache preventers are usually some sort of antidepressant usually with noradrenaline effects to block pain. The other common medications are anticonvulsant type meds, lyrica being the common one at the moment but there are many.

Im going on 12 months with headaches and tried many options above. Lyrica seems most helpful for me and try to limit pain meds to 3 days per week.
 
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Sorry, @Emmarose47 :hug:

Sumatriptan helps the pain sometimes, but not for long, and It takes about an hour to start working. I've decided the side effects aren't worth it though, and the pain is preferable to it. Some people think it's great.

Excedrin Migraine is my preferred headache med, but it only helps if I don't take it more often than twice a week.

I've had a prescription of Topamax sitting here for months, but I've never got the courage to try it after reading the side effects.

P.S. I wondered if anything has changed in your diet, supplements, or environment recently and the possibility of a sensitivity. I'll always get a headache when I eat aged cheese or enough dark chocolate.
 
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Wayne

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Hi could people give me their experience / knowledge on headaches please ..
Hi @Emmarose47 -- Sorry to hear how severe your headaches have gotten. Based on my experience with chronic headaches for many years, it sounds like they may be emanating from your brainstem area, which was the case for me. I feel I was able to do a number of things over the years to relieve most of the pressure and misalignment that was occuring in my upper cervical area, which I feel were major contributors to my headaches.

During the long period of time of making many discoveries of things that worked to improve some of my structural issues, I was able to control my headaches to a great degree by doing regular coffee enemas. Since I had daily headaches, I normally did daily CEs. When they became especially bad, I would do more than one CE in a day. It was remarkable how I could get dependable relief from both the headache pain and pressure by doing a CE.

I initially thought the primary reason CEs worked so well was because I was detoxing my liver and body, which CEs are "famous" for being able to do. Much of this is detoxification is from significantly raising glutathione levels in the body. I still believe that was the case, but I eventually came to believe that a great deal of the pain relief came from stimulating my vagus nerve, which CEs (or any enema) can do quite effectively.

The vagus nerve is responsible for regulating so many things in the body, including the body's parasympathetic nervous system. I think being able to modulate my vagal tone by doing regular CEs gave me a great deal of pain relief until I was able to successfully get my neck and upper cervical area better aligned. Since doing a number therapies to improve some structural things in my neck area, my headaches are so much better, and my overall functionality has increased from around 20-25% to around 75% in the past couple of years.
 
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Woof!

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A large percentage of my migraines are trigger-related, with a smaller percentage due to neck position and my C2 vertebrae going out of alignment. Identifying and eliminating migraine-triggers has given me a lot of my life back, and although avoiding triggers means I actively avoid a lot of things, it's worth it not to have clusters of migraines that could last up to a week.

I still have neck-induced migraines, but no trigger-induced migraines if I avoid:
- dust mites & dust (via dust mite covers on my pillows and mattress; no thick curtains and no carpeting)
- environmental triggers such as fragrances, smoke, cedar, powdered anything, cat litter...
- dietary triggers, which for me include apples, cauliflower, shrimp, grains (except oatmeal), starches (all kinds) and a bunch of other things.

Treating symptoms will only get you so far. Identifying the problem at hand, so you can treat it, is what can give you your life back.
 

Emmarose47

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Thanks all
Would people be able to share what symptoms they have with their headaches ( if u haven't already .,
How do they play out for u ?
Are headaches common with CFS ? And why is that ?
Could they purely be stressed related and not CFS symtom per se ?

Naive questions but ones I need to ask
 

hapl808

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My headaches usually follow PEM. The pattern is some kind of exertion (usually mental, but physical would do it as well). The next morning I have terrible acid reflux, and that afternoon usually headaches or migraines. If I have minimal to no activity, then I have no acid reflux and mild headaches (always some level of headache and brain fog). I've been tempted to try beta blockers as I often have tachycardia, plus maybe there's a connection between mental exertion, adrenaline, ammonia build up, etc. I've focused a lot on gut health as acid reflux almost always precedes the headaches, but with only mild success so far.
 
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Would people be able to share what symptoms they have with their headaches
Your headaches sound similar to mine (mine aren't constant like yours), which occur 2-4 days a week. It feels like an extremely tight vice is clamping my brain. It always comes with a extra large dose of brain fog. Sometimes I see flashing lights and have nausea and throbbing, but those aren't the norm.. I don't have the forehead pressure you described. I'm super light-sensitive because of them.
 
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Woof!

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Lots of us with ME have migraines and headaches of all kinds related to ME* or our many co-morbidities. That said, lots of migraines & headaches have nothing to do with ME, and stress never makes anything better.

Lots of people with ME are super-sensitive to triggers due to mast cell issues, though, so please keep identifying them and eliminating them in mind.

*From the Canadian Consensus Criteria: "Often there are significant headaches of new type, pattern or severity."
 

pattismith

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Hi could people give me their experience / knowledge on headaches please ..
Most days I have the following symptoms in reading in severity ..
Pain / heaviness across forehead , temple neuralgia which at worst feelings like screw drivers , left side radiating nerve pain to above ear ending in a large area of numb, thud denseness ...
I've long long been a headache suffer but this is bad .. I've had similar with the neuralgia in the past associated with sinus stuff ( sinus seem fine at mo ..
Doc.thinks stress related

She suggested beta blocker.of which I'm v reluctant ....
I had amitriptyline in past but was sedating ... However it did work .
I can't go on like this ...
do you have restless legs?
 

lenora

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Hi Emma.....I have (I think) been suffering from rather severe headaches from sinus for years, but recently they have become a lot worse.

It is more very noticeable in the evening and my dr. suspects migraines. Well, I'm not so sure of that...at least yet. If I didn't have other sinus symptoms I may agree. This did get worse after I had a carotid artery stent implanted. Since I have to have one on the other side, I really don't look forward to a worsening of symptoms...I'll bring that up with my cardiologist.

Sometimes if our sinuses are too dried out, we can experience headaches. Is that possible in your case? How about problems with your teeth....you'd be surprised at the weird symptoms you can have from infections, etc. You don't want to start down that road. Or even an undiagnosed ear infection.....now your Internist may be able to rule in/out many of them so that you aren't running around seeing every specialist in town.

But yes, headaches are a part of my life. I have noticed they're worse when I sit up in bed...how about you, anything different? It's getting so that I have allergies 365 days/year. Things change, that's for sure. Wishing you well. Yours, Lenora.
 
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Emmarose47

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Hi Emma.....I have (I think) been suffering from rather severe headaches from sinus for years, but recently they have become a lot worse.

It is more very noticeable in the evening and my dr. suspects migraines. Well, I'm not so sure of that...at least yet. If I didn't have other sinus symptoms I may agree. This did get worse after I had a carotid artery stent implanted. Since I have to have one on the other side, I really don't look forward to a worsening of symptoms...I'll bring that up with my cardiologist.

Sometimes if our sinuses are too dried out, we can experience headaches. Is that possible in your case? How about problems with your teeth....you'd be surprised at the weird symptoms you can have from infections, etc. You don't want to start down that road. Or even an undiagnosed ear infection.....now your Internist may be able to rule in/out many of them so that you aren't running around seeing every specialist in town.

But yes, headaches are a part of my life. I have noticed they're worse when I sit up in bed...how about you, anything different? It's getting so that I have allergies 365 days/year. Things change, that's for sure. Wishing you well. Yours, Lenora.
Hi Lenora
Yes sinus has been s thing for me for some yrs and I Def can get headache from that ..
Steaming and sinus salts good..
I've identified I am clenching my jaw a lot due to stress and I think this is what is causing it ..
I've just ordered a mouth guard for nite time and am doing jaw exercises in the day ..
It may be m.e related also as it weirdly moves aroun my head ....
 

BrightCandle

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I had headaches for years and they just got worse and worse. I took various migraine treatments which didn't really work and then eventually I came across HASD v3.2 and within about 2 weeks I had cleared them and my headaches are now mostly gone.

There is a relatively easy test to see if this will work for you, water and electrolyte fast for 3 days while taking Sodium Benzoate 4x a day about half a teaspoon. Once you stop the Sodium Benzoate on day 4 if the headache is significantly reduced then it is an ammonia headache and v3.2, LOLA and sudafed will help you.