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Old 12-23-2012, 05:35 PM   #1
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Constant head pain for 8 months - Please help!

Hi,

I am a 23 year old female. My problem began 8 months ago with a vertigo attack. I felt very dizzy, shaky, sweaty and almost fainted out of no where. Ever since then, I have felt lightheaded and off balance, spaced/zoned out and foggy headed. I have also had a constant dull ache on the top of my head and around the sides. It feels like my head is extremely heavy like a bowling ball and I also feel inward pressure. It varies in intensity, but never leaves. It is worse around my period.

I have had many tests done - blood work, sinus CT scan, MRI, MRA, spinal tap - that all came back normal. I have tried Topamax, Amitriptyline, Tramadol, Excedrin, Clonazapem, but none have helped. I have tried acupuncture and chiropractic work to no avail. I am currently on a gluten free diet and Propranolol.

I also had a tilt table test that came back semi-positive for POTS (postural orthostatic tachycardia syndrome) because my heart rate is higher than normal (but my blood pressure is fine) and I have increased my fluid and salt intake. I have been trying to exercise, but it is hard for me to be on my feet for a long time. However, doctors say that this condition does not explain my headache.

Does anyone know what could be causing this head pain? I would greatly appreciate any information.

 
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Old 12-24-2012, 09:35 AM   #2
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ma734 HB User
Re: Constant head pain for 8 months - Please help!

Quote:
Originally Posted by jck1130 View Post
Hi,

I am a 23 year old female. My problem began 8 months ago with a vertigo attack. I felt very dizzy, shaky, sweaty and almost fainted out of no where. Ever since then, I have felt lightheaded and off balance, spaced/zoned out and foggy headed. I have also had a constant dull ache on the top of my head and around the sides. It feels like my head is extremely heavy like a bowling ball and I also feel inward pressure. It varies in intensity, but never leaves. It is worse around my period.

I have had many tests done - blood work, sinus CT scan, MRI, MRA, spinal tap - that all came back normal. I have tried Topamax, Amitriptyline, Tramadol, Excedrin, Clonazapem, but none have helped. I have tried acupuncture and chiropractic work to no avail. I am currently on a gluten free diet and Propranolol.

I also had a tilt table test that came back semi-positive for POTS (postural orthostatic tachycardia syndrome) because my heart rate is higher than normal (but my blood pressure is fine) and I have increased my fluid and salt intake. I have been trying to exercise, but it is hard for me to be on my feet for a long time. However, doctors say that this condition does not explain my headache.

Does anyone know what could be causing this head pain? I would greatly appreciate any information.
I have many of your same issues and have been diagnosed with chronic migraine. Like you, none of the treatments I am trying are working. Actually I feel like I am getting worse and have many more bad days than good days now. I am still holding out hope that this will get figured out.

My hormones are in the toilet (I am 49 years old) so I have started hormone replacement therapy. It's only been a week and I have to be patient, but I get down sometimes thinking this will be my life from now on.

I tried Verapamil, Botox, OTC drugs, removed gluten and any other food I am intolerant or allergic to, am now off birth control pills and am on natural hormone replacement. I am currently on my second short course of steroids, which is not helping either.

I will keep an eye on your thread and post if I get any relief or changes. Please do the same.

Karen from Arizona

 
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Old 12-24-2012, 02:06 PM   #3
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Re: Constant head pain for 8 months - Please help!

Hi Karen,

Thanks so much for your response. Dealing with this is really miserable and I often get upset and want to give up. One of my doctors diagnosed me with chronic migraine too but I just don't feel like that is right. How long have you had this? Are you able to work? I am out of work right now because it was too much.

I hope you feel better too.

 
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Old 12-24-2012, 05:28 PM   #4
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Re: Constant head pain for 8 months - Please help!

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Originally Posted by jck1130 View Post
Hi Karen,

Thanks so much for your response. Dealing with this is really miserable and I often get upset and want to give up. One of my doctors diagnosed me with chronic migraine too but I just don't feel like that is right. How long have you had this? Are you able to work? I am out of work right now because it was too much.

I hope you feel better too.
This all started 1-1/2 years ago but has gotten progressively worse over the past 6 months or so. Now it is chronic, every day headache to some degree.

I do work 50 or so hours per week, but I work from home, so if I need to lay down, I lay down, or take a break. I am extremely lucky in that respect. If I worked out of the house in some office I would be on disability. There were times even working from home that I had the business card of my disability insurance guy in my hand, ready to dial and sign up.

I also question the chronic migraine diagnosis, but all the symptoms match and I have been tested 9 ways to Sunday for other issues, cleared of them all.

I am working on balancing my hormones (I am 49) because they are out of whack and I do get menstrual migraines so I am hoping that this therapy will help, but I may need some serious intervention to break the cycle and get over the hump.

I am here for you. You cannot give up. I will not give up. That is not to say that I don't get down or depressed, but tomorrow is always a new day. Keep your chin up and keep in touch. Take it day by day.

Right now I am inches away from climbing into the car and heading off to the ER because of the pain and pressure in my head, but I am going to try to get through tonight and hope tomorrow is better.

Karen from Arizona

 
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Old 12-24-2012, 05:59 PM   #5
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Re: Constant head pain for 8 months - Please help!

That's great that you can work from home. I wish that I felt well enough to go back to work. I'm having problems getting my disability approved because the insurance company doesn't think my condition is that bad.

I've had every test done too. Have you tried DHE injections in the hospital? My doctor told me that might break the headache cycle. I am scared to be in the hospital though. I've also considered botox. Did that do you any good? I've also wondered if I have a hormone problem too because my head pain is so much worse around my period.

I'm sorry your pain is so bad tonight . I hope you don't have to go to the hospital! Thanks again for talking to me.

 
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Old 12-24-2012, 06:10 PM   #6
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Re: Constant head pain for 8 months - Please help!

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Originally Posted by jck1130 View Post
That's great that you can work from home. I wish that I felt well enough to go back to work. I'm having problems getting my disability approved because the insurance company doesn't think my condition is that bad.

I've had every test done too. Have you tried DHE injections in the hospital? My doctor told me that might break the headache cycle. I am scared to be in the hospital though. I've also considered botox. Did that do you any good? I've also wondered if I have a hormone problem too because my head pain is so much worse around my period.

I'm sorry your pain is so bad tonight . I hope you don't have to go to the hospital! Thanks again for talking to me.
I have not had any intravenous treatment yet, but that is what will be done if I decide to head off to the ER - they also tell me we need to 'break' the cycle, but I hate the thought of spending 3 days out of it -the treatment for me would be three separate trips three days in a row. The Botox I had did not help - it was administered 6 weeks ago. I am one of the 25% that is does not help.

Find a local 'compounding' pharmacy and ask them for a list of doctors that prescribe bio-identical hormones. Many are Naturopaths but there should be some MD's that would be in your health insurance plan. They can run hormone labs to check your levels or try to give you something for menstrual migraines.

I also heard that taking Ibuprofen for a couple of days before you start your period can help tremendously with menstrual migraines. Unfortunately I am too far gone now for preventative therapy.

Karen from Arizona

 
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Old 12-24-2012, 07:08 PM   #7
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Re: Constant head pain for 8 months - Please help!

Thank you for that advice. I will definitely look into that. I've also considered seeing an endocrinologist. Have you seen one?

Last edited by moderator2; 12-24-2012 at 08:09 PM.

 
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Old 12-25-2012, 06:05 PM   #8
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Re: Constant head pain for 8 months - Please help!

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Originally Posted by jck1130 View Post
Thank you for that advice. I will definitely look into that. I've also considered seeing an endocrinologist. Have you seen one?
I did see a Mayo Clinic endo last month, but only because I had a saliva test done that showed I had elevated cortisol. He was not interested in discussing anything else with me. It was a very disappointing visit.

He ran his own cortisol test and it showed normal levels, so who knows? I plan on having a conversation with my hormone doc about adjusting my medications. We'll take it from there.

Today it feels like my head will explode at any second and I am dizzy with every turn of my head.

Karen from Arizona

 
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Old 12-25-2012, 06:29 PM   #9
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Re: Constant head pain for 8 months - Please help!

A lot of doctors I have seen haven't seemed to care at all and just dismissed me. It's so frustrating.

Have you tried Topamax? It didn't help me but it might work for you.

 
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Old 12-26-2012, 04:23 AM   #10
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Re: Constant head pain for 8 months - Please help!

Quote:
Originally Posted by jck1130 View Post
A lot of doctors I have seen haven't seemed to care at all and just dismissed me. It's so frustrating.

Have you tried Topamax? It didn't help me but it might work for you.
I opted not to try Topamax since my headache neurologist said it was the last choice on his list and I would have trouble remembering names and such. I do software support for a living and I have to be alert and able to think.

We went from Verapamil right to Botox. I was going to try Pamelor but I got approved for the Botox right away. I really don't want to be on any sort of anti-depressant - it would be my absolute last resort.

I am seriously hoping the hormone therapy straightens me out. It all makes sense since hormones can play such a big part in how you feel and it has been proven that mine are seriously out of balance.

Karen from Arizona

 
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dizziness, headache, heavy head, pots syndrome, vertigo



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