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Old 01-01-2012, 03:26 PM   #16
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Re: Severe headaches with fibro?

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Originally Posted by Linds13 View Post
Thank you! I've been doing a lot of research and I believe that may have been one thing I stumbled upon because I remember reading about the botox injections and that particular nerve.
Can you give me a run down of all your symptoms? I'm interested to compare them to mine if you don't mind.
Thank you for your response and support!
Hi Linds. It has been a long time since I had this thing going on, but what I do remember is 'shock' pain that seemed to focus behind the eye. Then there was the steady all-the-time pain that was there. I also had some of that going on along my chin. The lip part wasn't as bad. I also would have trouble with pain on the roof of my mouth on the side of the neuralgia. That part was off and on, however. No amount of pain remedy would help this pain, it was in a class all its own.

Bye!
Kirstee

 
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Linds13 (01-01-2012)
Old 01-01-2012, 03:56 PM   #17
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Re: Severe headaches with fibro?

Thank you, I also have the "shock" sensation, but it is focused more in the lower part of my face and the inside of my mouth. The pain is focused right above my right eye brow and will stretch down and make even my top teeth on the right side hurt.
When you experienced the "shock" sensation did it almost make you "freeze" for an instant when it happened? That's how mine is...its like for just the split second that it happens my whole face is just kinda frozen...its such a hard feeling to put into words!

Update on my symtoms: I have had 2 more massive nosebleeds since my last post. My head pain eases every now and again, but it has never gone completely away, and I am now quite sure that laying down causes it to worsen. The blurred vision in my right eye comes and goes, getting worse when my head pain gets worse. I definitely cannot wait until Tuesday.

 
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Old 01-01-2012, 04:01 PM   #18
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Re: Severe headaches with fibro?

If you need to go to the ER, then go. They will make sure you are stable, at a minimum. You might have to wait until Tuesday for answers, though, if the ER can't immediately figure it out.

Or, maybe they will do a scan of your head and identify the problem right off. I certainly hope so!

Do you have someone to watch your children if you need to go to the hospital?

 
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Linds13 (01-01-2012)
Old 01-01-2012, 04:10 PM   #19
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Re: Severe headaches with fibro?

Yes, i do have a few people who could watch her no problem if i have to go. I'm going to try to wait but if it gets to he point that i think i need to go i wont hesitate to do so.

 
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Old 01-01-2012, 05:17 PM   #20
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Re: Severe headaches with fibro?

I was diagnosed with chronic migraines when I was five and fibro as a teen. I have always had them so I am not sure if there is a definitive link or not but there for sure is a link with me. I have never found a medication to help with them and I continuously get nauseous with them and vomit. my fibro is very bad. I take cymbalta and it helps but the pain is just bearable. I hope you get help and dont end up with the pain that I have..

 
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Linds13 (01-01-2012)
Old 01-02-2012, 11:39 AM   #21
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Re: Severe headaches with fibro?

Linds13..........PLEASE GO TO TH ER!....

 
Old 01-02-2012, 12:46 PM   #22
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Re: Severe headaches with fibro?

Uhhggg.
I HATE going to the ER...because I feel like they don't take things like this seriously...they find the easiest and quickest thing to tell you and send you home.
I'd rather wait til tomorrow to talk to my doctor who I am comfortable with and who will take me seriously. If tomorrow she wants me to go to the hospital, then I will...but I just don't trust ERs.
Maybe it is wrong of me...but my past experiences with going to the ER have not been real great...I feel like they sit around waiting for something terrible to happen like a car accident victim or something and anyone else who comes in just isn't important.

 
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Old 01-02-2012, 01:48 PM   #23
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Re: Severe headaches with fibro?

I kind of feel the same way about the ER. If you're bleeding profusely or having a possible heart attack, they're great. But if you have something that could be complicated and DOESN'T seem to be an immediate threat, they often can't do much.

 
Old 01-02-2012, 07:54 PM   #24
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Re: Severe headaches with fibro?

Ask a doctor to treat you with physical therapy for Myofacial Pain Syndrome. It is kind of like Fibromialgia and as you may know already they sometimes occur simultaneously in a patient. However they are not the same thing. I have experienced what your describing for 3 years the only relief I have gotten is physical therapy for Myofacial pain in the cervical region. The best I can tell you and keep this short is...Myofacial pain causes referred pain, like headaches, toothaches, and neck/back pain. This pain can often be caused by trigger points that you may have developed in your neck due to your Fibro tender points. If your doctor says you have trigger points From Fibromialgia or anyone else for that matter they have been miseducated. Fibromialgia causes soreness in tender points. Myofacial pain causes referred pain that radiates from trigger points, in severe cases like mine, there can be thousands of trigger points. Not just 11 to 18 tender points. Physical Therapy will get rid of the trigger points in your neck and relax the muscles that are causing your headache. Good luck to you....it was a long battle and still is to get rid of those migraines...I am still holding off on the Botox. Facial injections are extremely painful.

 
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Linds13 (01-03-2012)
Old 01-03-2012, 09:13 AM   #25
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Re: Severe headaches with fibro?

Well, I just got home from the doctor.
I have extremely high blood pressure (which can cause extreme headaches and nosebleeds). She put me on a blood pressure medication and gave me another medication to take when the headaches become extreme...she said hopefully a week or two into taking this medicine my headaches will be completely gone. That is ideal anyways. She also ordered a bunch of different blood labs to see if they show anything else.
If they don't go away or get worse, then she wants me to get a CT done because my symtoms are also similar to that of brain tumors.
The only reason she didn't go ahead and do the CT is because my insurance won't pay for it unless there is proof that you have "tried other medical therapies first," which I think is completely ridiculous, but there isnt much I can do about it.
So, we will see how this goes...

 
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Old 01-03-2012, 09:38 AM   #26
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Re: Severe headaches with fibro?

That's why i ask you to go to the ER...but yes i agree with you on that the ER is usually a big waste of time an money... was just worried with the bleeding and such....we as fibro suffers just feel everything is Fibro an we need to just live with it, but then if something really is happening to us we brush it off.....:/....Im sure its not a brain tumor but yes im sure she'll ok a Scan just to be safe so dont stress over that. my daughter had tests an they came up saying she most likely had a brain tumor. went through all the scary tests 2 x over...at the end it came back alll clear!..but boy did we get allll worked up over it!!!..hang in there feel better ,,please keep us updated ...

 
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Old 01-03-2012, 11:01 AM   #27
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Re: Severe headaches with fibro?

I have to agree that as Fibro sufferers we do tend to just blame everything on the Fibro. I know I definitely do. These headaches have been going on for weeks and until the nosebleeds started I was just chalking it up to the Fibro...
As Fibro sufferers we kinda get screwed, because I know that I am very hesitant to go to the doctor about any kinda of hurting anymore, because I feel like a lot of times when you tell a doctor "Oh, I have Fibromyalgia." They just automatically assume that any pain you have IS because of the Fibro...so I think that sometimes they don't look as hard for things as they should in Fibro sufferers. I am very lucky that I have a very open and thorough doctor that trusts my feelings and believes me when I tell her, "I just really don't think this is Fibro related..."

 
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Old 01-03-2012, 01:06 PM   #28
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Re: Severe headaches with fibro?

When do you get a follow up appt ?...how are you feeling so far on the BP med? my hubby started BP med i think,,2 yrs now ago,,it took about a month for him to start feeling better an not the weird drowsy feeling....

 
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Old 01-03-2012, 01:12 PM   #29
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Re: Severe headaches with fibro?

Ah, that makes sense. High blood pressure could definitely cause that, and I am SO GLAD it was identified right off.

It might take trial and error for you to find the right drug and dose to control your blood pressure, but do keep trying until you find it. Also, you may need to eliminate caffeine and consider limiting salt. A home blood pressure monitor might be helpful at some point. And check all your other medications to see if any of them can affect blood pressure.

 
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Old 01-03-2012, 01:20 PM   #30
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Re: Severe headaches with fibro?

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When do you get a follow up appt ?...how are you feeling so far on the BP med? my hubby started BP med i think,,2 yrs now ago,,it took about a month for him to start feeling better an not the weird drowsy feeling....
I have a follow up in 2 weeks, Jan 17th, unless it gets worse.
I haven't take any of the BP meds yet. She said to take them at night before I go to bed (I'm assuming that is due to the drowsy feeling that you are talking about). If you don't mind me asking, what medication is your husband on? She prescribed me Inderal. It is a beta-blocker.

 
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