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Head Pain (Read 4241 times)
angelloz
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Head Pain
02/13/12 at 13:42:27
 
Hello everyone! Does anyone else have problems with head pain? This is one of my worst symptoms. I have had migraines since age 32, but since my illness I have constant moderate to severe head pain. My skull has areas that are sore to the touch, also parts of my forehead. Sometimes I can barely stand to lay my head on my pillow. When I move my head from side to side there are gritty, grinding sounds. These are in my head not the neck area. My primary care doctor has wanted me to use some pretty strong pain killers but first of all these type of medicines make me feel terrible and I don't want to need stronger and stronger medicines. I am awaiting ketotfin from a compounding pharmacy, hope this will help. My blood pressure issues are scary but the constant head pain has me down. I learn so much from everyone each day. Thanks to all!
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Starflower
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Re: Head Pain
Reply #1 - 02/13/12 at 14:04:03
 
Do you mean headache pain... or scalp pain?  Or maybe pain from your skull?  The first two could definitely be mast cell symptoms... but masto bone pain is usually in areas with a lot of bone marrow (hips, legs).

Heather
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Joan
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Re: Head Pain
Reply #2 - 02/13/12 at 16:51:56
 
  If the pain feels muscular, it could be from your jaw.  Do you clench?  I recommend a visit to your doctor who prescribes for your migraines to help you sort this out.  Have you tried ice or heat?
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Joan
 
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angelloz
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Re: Head Pain
Reply #3 - 02/14/12 at 01:13:41
 
Hello again, The pain starts out feeling like pressure but increases in severity then can lead to a migraine. I have tried every medicine preventative etc. over the past 20 years for migraines. The new daily pain I can't seem to get any doctor to grasp it. Sometimes it goes away at night so it may be somewhat orthostatic. I did doubt that it was mast cell related but wanted to check. I think it has more to do with dysautonomia. I have so many problems...digestion ,sometimes constipated, breathing, blood pressure, high ,low depends on the day, dizziness, trembles, feels like swollen lymph nodes at times, tender sore mouth, I do think I clench at night. Dr. Castells thinks with my 13 tryptase I have a mast cell problem but my symptoms seem more autonomic from what I have read from all of you. Try not to feel scard but it is hard. It is getting harder to stand for any length of time without nausea, weakness, feeling faint etc... Sad Thanks for listening. I know I need to keep up hope Smiley
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Joan
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Re: Head Pain
Reply #4 - 02/14/12 at 20:51:34
 
You should be hopeful, definitely!

When first sick, I had most of the symptoms you have, and I was ultimately diagnosed with SM. What you describe can all be caused by mast cells acting badly.

What diet are you following now and what meds are you currently taking?  Have you talked with Dr. Castells about this?  She's a great doctor, so maybe she has ideas how to help.  Your previous posts led me to think you weren't on enough medicine to get relief.  Are you able to increase any?
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Joan
 
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angelloz
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Re: Head Pain
Reply #5 - 02/15/12 at 00:19:23
 
Joan and all,
Thank you so much for the encouragement. The last time I spoke with Dr. Castells she prescribed Ketotfin. I found a compounding pharmacy and will pick that up today, but admit I am afraid to try new medicine. I too think I may need to increase medicine to see benefits but I react so badly at times it is hard to increase. Last night I felt really bad and my BP was 82/57. I had the epi ready but didn't use it. I sipped cold water and got it back up a bit. I need to remember it takes trial and error and I need to keep trying. Thanks for listening.
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Joan
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Re: Head Pain
Reply #6 - 02/15/12 at 06:26:17
 
If you can take Benadryl without reacting, get some liquid, dye-free or the dye-free gel caps, and take a full adult dose if you get symptoms like you had last night.  Do report this reaction to your doctor.  Are you staying very hydrated?  That can help with low BP.

If you're really afraid to take new meds, ask your doctor if you can take it in his/her office.  I've sat outside the ER with a friend and taken a new medicine before, just in case.  LOL.

Think about what you did and what you ate before you started feeling bad.  Maybe there's a relationship there.
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Joan
 
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Re: Head Pain
Reply #7 - 02/23/12 at 22:51:15
 
I've had classic migraine since I was 15.  Often they come about when we are deficient in magnesium.  Try "Natural Calm" powdered magnesium.  Vitamin Shoppe and other health food stores sell it.  It also helps with sleep and regularity.
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DeborahW, Founder
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Re: Head Pain
Reply #8 - 02/24/12 at 00:07:37
 
Part of what you are experiencing could be histamine headaches. When I get those, I take extra histamine blockers and the headache goes away.
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