Re: Just curious...anyone else get migraine with orgasm?

[Guest guest]

Hi ,

My daughter has tsc, chiari, and cranial instability. You describe what sounds

like dynamic instability. Certain head positions seem to trigger the migraine?

The instability has irritates the brainstem from the bony elements in

C-1 and C-2. Her symptoms are different than yours, but she is only 14 :-)

I hope you are able to find answers soon. Best wishes,

's mom

Just curious...anyone else get migraine with orgasm?

Cant remember if we discussed this or not....I dont think so. Not always but

occasionally when I orgasm I get a migraine immediately. I can feel the headache

coming on as the orgasm builds and if I stop sometimes it will ease back off.

Sometimes its too late at that point. If I continue to the end when that is

happening it is a major event. The first time it happened it lasted for several

days and I eventually wound up going to the ER when I realized my BP was

230/118. They thought I was stroking out and that cost me over $10,000 so I dont

go to ER anymore. I don't know if it is just my neck (fractured C5 & 6, lots of

arthritis)or if it is TC related, so thought I would ask if anyone else has it.

It does seem to be positional. If I have my head " forward " it does it every time

so I have to be very conscious of how I hold my head (just what I want to be

concentrating on LOL) My cervical MRI was viewed by a Chiari doc and he said I

didn't have it and I do not think I am tethered right now. Ideas?

[Guest guest]

I will now be looking up dynamic instability, never heard of it!  Thanks

!

Many Blessings to you and  

Subject: Re: Just curious...anyone else get migraine with orgasm?

To: tetheredspinalcord

Date: Saturday, March 5, 2011, 7:15 PM

 

Hi ,

My daughter has tsc, chiari, and cranial instability. You describe what sounds

like dynamic instability. Certain head positions seem to trigger the migraine?

The instability has irritates the brainstem from the bony elements in

C-1 and C-2. Her symptoms are different than yours, but she is only 14 :-)

I hope you are able to find answers soon. Best wishes,

's mom

Just curious...anyone else get migraine with orgasm?

Cant remember if we discussed this or not....I dont think so. Not always but

occasionally when I orgasm I get a migraine immediately. I can feel the headache

coming on as the orgasm builds and if I stop sometimes it will ease back off.

Sometimes its too late at that point. If I continue to the end when that is

happening it is a major event. The first time it happened it lasted for several

days and I eventually wound up going to the ER when I realized my BP was

230/118. They thought I was stroking out and that cost me over $10,000 so I dont

go to ER anymore. I don't know if it is just my neck (fractured C5 & 6, lots of

arthritis)or if it is TC related, so thought I would ask if anyone else has it.

It does seem to be positional. If I have my head " forward " it does it every time

so I have to be very conscious of how I hold my head (just what I want to be

concentrating on LOL) My cervical MRI was viewed by a Chiari doc and he said I

didn't have it and I do not

think I am tethered right now. Ideas?

[Guest guest]

Oh my...does have to wear a collar? How are they treating her for

this? Much of what I read made sense, I always wondered whether the wrong

position triggered a spike in BP which caused the headache or the headache made

the BP shoot up. Come to think of it, that headache is a lot like a spnal leak

headache now that I think of it. God forbid I ride a rollarcoaster (which I LOVE

to do) my neck locks up and I cant move it for a week (gave them up years ago)

Hmmm, another interesting thing was that it said it can be associated with

osteogenesis imperfecta. I do not have that (unless there is a milder form than

what I read about) but I have broken almost every bone in my body, some more

than once. One time I served a volleyball and shattered my hand, another time I

was walking home from school and my foot was hurting. I told my Mom and she said

I probably had a rock bruise....three weeks later I was still limping on it so

she took me to the doc,

fractured in four places! I was in a cast for over a year before it healed! and

there was no " injury " to it. I had a hysterectomy in Jan and suddenly I am

having horrendous joint and bone pain. I see my surgeon on Weds and I'm going to

ask her for a bone scan, very curious as to what my bones really look like.  

Subject: Re: Just curious...anyone else get migraine with orgasm?

To: tetheredspinalcord

Date: Saturday, March 5, 2011, 7:15 PM

 

Hi ,

My daughter has tsc, chiari, and cranial instability. You describe what sounds

like dynamic instability. Certain head positions seem to trigger the migraine?

The instability has irritates the brainstem from the bony elements in

C-1 and C-2. Her symptoms are different than yours, but she is only 14 :-)

I hope you are able to find answers soon. Best wishes,

's mom

Just curious...anyone else get migraine with orgasm?

Cant remember if we discussed this or not....I dont think so. Not always but

occasionally when I orgasm I get a migraine immediately. I can feel the headache

coming on as the orgasm builds and if I stop sometimes it will ease back off.

Sometimes its too late at that point. If I continue to the end when that is

happening it is a major event. The first time it happened it lasted for several

days and I eventually wound up going to the ER when I realized my BP was

230/118. They thought I was stroking out and that cost me over $10,000 so I dont

go to ER anymore. I don't know if it is just my neck (fractured C5 & 6, lots of

arthritis)or if it is TC related, so thought I would ask if anyone else has it.

It does seem to be positional. If I have my head " forward " it does it every time

so I have to be very conscious of how I hold my head (just what I want to be

concentrating on LOL) My cervical MRI was viewed by a Chiari doc and he said I

didn't have it and I do not

think I am tethered right now. Ideas?

[Guest guest]

Here is an article discussing Basilar Invagination, Basilar Impression, and

Atlantoaxial Subluxation -- all somewhat related. I still do not fully

understand the subtle differences in these diagnosis

http://www.dizziness-and-balance.com/disorders/central/cerebellar/basilar%20inva\

gination.htm

a small portion from the article:

(bolding by me)

-----------------------------

Treatment

Neurosurgery is recommended when neurologic symptoms and signs are present, and

cord compression is confirmed by MRI. When these features are absent, a

conservative approach may be pursued, such as a collar, nonsteroidal

anitinflammatory drugs (NSAIDs), and simple neck traction.

------------------------

I wonder if some type of antiinflammatory would help keep you from developing a

full blown migraine? It would have to be taken ahead of time. Changing

position and finding a way to keep your head, neck, and shoulders relaxed may

help also. (I know, easier said than done).

Before the fusion surgery, caffeinated soda used to slightly relieve some of her

symptoms. Not sure why this worked!

Best wishes, - 's mom

Just curious...anyone else get migraine with orgasm?

Cant remember if we discussed this or not....I dont think so. Not always but

occasionally when I orgasm I get a migraine immediately. I can feel the headache

coming on as the orgasm builds and if I stop sometimes it will ease back off.

Sometimes its too late at that point. If I continue to the end when that is

happening it is a major event. The first time it happened it lasted for several

days and I eventually wound up going to the ER when I realized my BP was

230/118. They thought I was stroking out and that cost me over $10,000 so I dont

go to ER anymore. I don't know if it is just my neck (fractured C5 & 6, lots of

arthritis)or if it is TC related, so thought I would ask if anyone else has it.

It does seem to be positional. If I have my head " forward " it does it every time

so I have to be very conscious of how I hold my head (just what I want to be

concentrating on LOL) My cervical MRI was viewed by a Chiari doc and he said I

didn't have it and I do not

think I am tethered right now. Ideas?

[Guest guest]

Hi again :-)

wore a brace for about 3 years prior to her fusion surgery. I could

not wrap my head around a transoral decompression, fusion. She had the neck

traction/fusion surgery about 4 years ago.

I am sorry you are having these difficulties. Hopefully your doctor will help

sort it all out. It sounds like you have a very high pain tolerance to not know

you had broken bones!

's mom

Just curious...anyone else get migraine with orgasm?

Cant remember if we discussed this or not....I dont think so. Not always but

occasionally when I orgasm I get a migraine immediately. I can feel the headache

coming on as the orgasm builds and if I stop sometimes it will ease back off.

Sometimes its too late at that point. If I continue to the end when that is

happening it is a major event. The first time it happened it lasted for several

days and I eventually wound up going to the ER when I realized my BP was

230/118. They thought I was stroking out and that cost me over $10,000 so I dont

go to ER anymore. I don't know if it is just my neck (fractured C5 & 6, lots of

arthritis)or if it is TC related, so thought I would ask if anyone else has it.

It does seem to be positional. If I have my head " forward " it does it every time

so I have to be very conscious of how I hold my head (just what I want to be

concentrating on LOL) My cervical MRI was viewed by a Chiari doc and he said I

didn't have it and I do not

think I am tethered right now. Ideas?

[Guest guest]

Thanks for the link, I will look it up and see if I can wrap my head around it

LOL  Hmmm, interesting about the anti-inflammatory, I just started taking MSM

which is a natural one, wonder if it will help at all? Fortunately, for me I

guess, I dont have a partner so orgasm doesnt come up much LOL I have Pudendal

Neuralgia so I cannot have any penetration and I wind up in the ER with

orgasms....not much of a candidate for a lover LOLOL I'm glad is doing

better! 

Subject: Re: Just curious...anyone else get migraine with orgasm?

To: tetheredspinalcord

Date: Saturday, March 5, 2011, 7:15 PM

Hi ,

My daughter has tsc, chiari, and cranial instability. You describe what sounds

like dynamic instability. Certain head positions seem to trigger the migraine?

The instability has irritates the brainstem from the bony elements in

C-1 and C-2. Her symptoms are different than yours, but she is only 14 :-)

I hope you are able to find answers soon. Best wishes,

's mom

Just curious...anyone else get migraine with orgasm?

Cant remember if we discussed this or not....I dont think so. Not always but

occasionally when I orgasm I get a migraine immediately. I can feel the headache

coming on as the orgasm builds and if I stop sometimes it will ease back off.

Sometimes its too late at that point. If I continue to the end when that is

happening it is a major event. The first time it happened it lasted for several

days and I eventually wound up going to the ER when I realized my BP was

230/118. They thought I was stroking out and that cost me over $10,000 so I dont

go to ER anymore. I don't know if it is just my neck (fractured C5 & 6, lots of

arthritis)or if it is TC related, so thought I would ask if anyone else has it.

It does seem to be positional. If I have my head " forward " it does it every time

so I have to be very conscious of how I hold my head (just what I want to be

concentrating on LOL) My cervical MRI was viewed by a Chiari doc and he said I

didn't have it and I do not

think I am tethered right now. Ideas?

[Guest guest]

This may be a bit too late but isn't this " normal " because of constriction of

blood vessels? 

" If it turns out to be a sexual headache, the doctor will probably say that

these headaches are very common and that they usually occur right after orgasm

due to the sudden change in blood flow and blood pressure. "

http://blogs.webmd.com/sexual-health-sex-matters/2006/05/orgasm-and-migraines.ht\

ml

Just curious...anyone else get migraine with orgasm?

Cant remember if we discussed this or not....I dont think so. Not always but

occasionally when I orgasm I get a migraine immediately. I can feel the headache

coming on as the orgasm builds and if I stop sometimes it will ease back off.

Sometimes its too late at that point. If I continue to the end when that is

happening it is a major event. The first time it happened it lasted for several

days and I eventually wound up going to the ER when I realized my BP was

230/118. They thought I was stroking out and that cost me over $10,000 so I dont

go to ER anymore. I don't know if it is just my neck (fractured C5 & 6, lots of

arthritis)or if it is TC related, so thought I would ask if anyone else has it.

It does seem to be positional. If I have my head " forward " it does it every time

so I have to be very conscious of how I hold my head (just what I want to be

concentrating on LOL) My cervical MRI was viewed by a Chiari doc and he said I

didn't have it and I do not

think I am tethered right now. Ideas?

[Guest guest]

Thanks for the link. The Neuro's concern was the BP being so high it risks

stroke. Didn't tolerate the med he wanted me on but was just curious if it was a

" me " thing or a TC thing, guess its a " me " thing.  

Just curious...anyone else get migraine with orgasm?

Cant remember if we discussed this or not....I dont think so. Not always but

occasionally when I orgasm I get a migraine immediately. I can feel the headache

coming on as the orgasm builds and if I stop sometimes it will ease back off.

Sometimes its too late at that point. If I continue to the end when that is

happening it is a major event. The first time it happened it lasted for several

days and I eventually wound up going to the ER when I realized my BP was

230/118. They thought I was stroking out and that cost me over $10,000 so I dont

go to ER anymore. I don't know if it is just my neck (fractured C5 & 6, lots of

arthritis)or if it is TC related, so thought I would ask if anyone else has it.

It does seem to be positional. If I have my head " forward " it does it every time

so I have to be very conscious of how I hold my head (just what I want to be

concentrating on LOL) My cervical MRI was viewed by a Chiari doc and he said I

didn't have it and I do not

think I am tethered right now. Ideas?

[Guest guest]

I get them occasionally.

Hope it gets better for you! That's what we need with TC lol a good sex life!

Just curious...anyone else get migraine with orgasm?

Cant remember if we discussed this or not....I dont think so. Not always but

occasionally when I orgasm I get a migraine immediately. I can feel the headache

coming on as the orgasm builds and if I stop sometimes it will ease back off.

Sometimes its too late at that point. If I continue to the end when that is

happening it is a major event. The first time it happened it lasted for several

days and I eventually wound up going to the ER when I realized my BP was

230/118. They thought I was stroking out and that cost me over $10,000 so I dont

go to ER anymore. I don't know if it is just my neck (fractured C5 & 6, lots of

arthritis)or if it is TC related, so thought I would ask if anyone else has it.

It does seem to be positional. If I have my head " forward " it does it every time

so I have to be very conscious of how I hold my head (just what I want to be

concentrating on LOL) My cervical MRI was viewed by a Chiari doc and he said I

didn't have it and I do not

think I am tethered right now. Ideas?