Any Ideas?...Please help me. :o(

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Littlemissheadache
New Member


Date Joined Sep 2005
Total Posts : 3
   Posted 9/1/2005 7:40 PM (GMT -6)   

PROBLEM:

I have severe headaches, I get them all day every day.  Most of the time they do not end.  I experience a piercing feeling almost as if I am being stabbed in the head.  I have enormous pressure in my head, neck and sometimes down into my shoulders.  These headaches last weeks and sometimes months at a time.  Occasionally I can go a few hours without pain.  When the headaches are severe, about 80-90% of the time, they are disabling.  I cannot move and I experience blindness, dizziness, and nausea.  Often times I dry heave during these headaches.  Sometimes I will pass out for 10-20 seconds at a time.  I believe this is do to my dizziness and the level of pain I am experiencing at the time, which is quite great.

 

MY SYMPTOMS:

  • Piercing Headaches all day every day
  • Lump on my neck in between my shoulder blades, appears to be inflammation.  I have been told by an orthopedic doctor that this is not related to my headaches.
  • Blindness (with headache)
  • Nausea (with headaches)
  • Passing out (with headaches)
  • Numbness in upper body
  • Gained 35 lbs in less than a year
  • Depression (Before or after headaches)
  • Anxiety  (Before or after headaches)
  • Insomnia
  • Loss of sex drive
  • Very difficult to do ANYTHING physical without getting a headache
  • Pressure along the top of my shoulders and forehead
  • Sleep Apnea-like symptoms, never diagnosed with it (Jerking while I sleep, sometimes enough to wake myself up, fiancé describes it as gymnastics while I sleep)
  • Dizziness
  •  

Beginning signs of headache:

  • Eyes become sore / achy type of feeling.  Not related to moving them and it doesn’t matter if they are opened or closed.
  • Whole head hurts – At one time, my whole head will hurt, doesn’t start at one place like normal headaches.
  • Throbbing begins – I can feel my heartbeat in my head.
  • Stabbing – finally I receive a stabbing pain.  Doesn’t seem to be the “action” of stabbing, like repeated stabbing, however that’s the initial feeling.  Occasionally its like being “stabbed” again with pain.
  • Lots of pressure in my neck, shoulders & head, especially behind my forehead.

 

During headaches:

  • When stabbing begins, she begins to loose her vision, blurry then to blind.
  • Extreme dizziness
  • Left ear deadens – then she hears a high pitch squealing noise/loud ringing.
  • Nausea most likely caused by dizziness.
  • Passes out cold from pain and dizziness / blood pressure drops quite dramatically.

 

 

Past Tests and Results:

  • 2 MRIs = Shadow in brain, a second MRI to determine whether or not it is a tumor.  The results were negative.
  • CT = Negative
  • EEG = Negative
  • EKG = Negative
  • Diabetes = Negative
  • Cushing’s Disease = I have every symptom but high blood pressure, but the results were negative
  • 4 day infusion of DHE = made me sleep, but had no long term effects

 

Current Medications and Treatments

  • Yasmin, once a day, morning, birth control  (Doc changed this medicine because she thought the old medicine could be contributing to headaches.  I do not remember my old medication’s name.)
  • Seroquil, take as needed 25 mg pills, prescribed for my headaches, I take 2 to 4 pills and it puts me to sleep but I still wake up with headaches.
  • Indocin, take as needed, for my headaches, does not help
  • Compazine, take as needed, for my nausea that comes with the headaches
  • Paxil, 30 mg. once a day, morning, for Anxiety and Depression
  • Flexerall, 5 mg, once a day, bedtime, not helping

 

Treatments and Medication History

  • Zomig dissolvable pill, no response
  • Zomig Nasal sprays, no response
  • Paxil CR, Anxiety and Depression
  • Paxil (regular), CR was not strong enough, so I was bumped up 
  • Medryll Taper, for migraines, but no other response 
  • Imitrex, for migraines, no response
  • Depecote, for migraines, no response
  • Topamax, for migraines, no response
  • Formula 303, natural muscle relaxants, did not work
  • Allegra, allergies

 

Possibly Helpful History

  • Headaches only started 3 years ago – Headaches started one at a time, first months apart, then suddenly they were every few weeks, then every week, now every day.  The only thing that broke the headache during this time was that Toradol and Fenergan  was administered at the ER.
  • 4th grade had Shanghai Flu
  • Was diagnosed with “Stingers”, sharp shooting pains up the back of my neck up into my head causing numbness in tongue for seconds and loss of control of head for half a second, if that
  • Had surgery on my left shoulder in 2002 for anterior subluxation
  • I often need someone here with me to help me walk to the bathroom, shower, and even eating

 

Do you have any ideas? 

 

Little Miss Headache


Nicky (coquitlam55)
Veteran Member


Date Joined Jul 2005
Total Posts : 505
   Posted 9/1/2005 8:29 PM (GMT -6)   

Welcome Little Miss Headache!

I feel for you. Nothing is worse than having a headache everyday. I think you'll find a lot of us here have experienced or are experiencing similar chronic headaches.

Are you seeing a neurologist? I find my neurologist extremely helpful in narrowing things down.

I have followed a similar pattern and I'm pretty sure that I'm caught up in a cycle of rebound headaches. Some of the medications you mentioned are known to trigger migraines or cause rebound headaches. The severity of your headaches definitely sound like migraines - though I don't have any medical training just lots of experience. I have found that my rebound headaches can cause migraines.

Triptans (i.e. Zomig and Imitrex) are known to cause rebound headaches. Some anti-depressants (I know for sure Celexa but not sure about Paxil) are known to trigger headaches. Birth control can cause migraines. I'm not sure about the others. If I'm not sure I often research them on the web and am able to find out if they're know to or not. Or the medication documentation will also tell you if it's a risk.
 
Another thing I have tried and found somewhat successful is identifying triggers, especially foods. Try avoiding things like coffee, chocolate, aged cheeses, red wine, MSG, nitrites, nitrates and anything with preservatives in it. There are many good books out there that explain them.
 
There are a few thoughts that might help or you may have tried them already. It sounds to me like you need some expert medical advice, like a neurologist or pain specialist.
 
Good luck!
 
 
Coquitlam55 (aka Nicky)
 
"The world is full of suffering, it is also full of overcoming it." --Helen Keller
I try and remember this each day I have a headache that I'm not sure I can overcome.


CRANKY 1
Veteran Member


Date Joined Aug 2005
Total Posts : 616
   Posted 9/2/2005 7:54 AM (GMT -6)   

Welcome Little Miss Headache!

You didn't mention what type of doctor you were seeing for your headaches, but from all the information you listed, you are seing the wrong one.  I looked at your list of symptoms, and almost all of them can be directly attributed to the Seroquel.  This medication is for use to control manic depression and schizophrenia.  I could find no information that it has any use for controlling or helping with migraines, but I found a whole list of side effects that could have been taken straight from your posting. 

As far as the hump at the base of your neck goes, believe me, that is pure stress you are carrying around with you.  I had one for years.  Nothing was going to make it go away until I lowered my stress level.  I found this out after leaving a high pressure job and a very bad marriage. EUREEKA!  NO MORE HUMP!!!  All gone now.  I use to get neck rubs and massages that were extremely painful, and now nothing is tensed up.

It seems that you have been put on some good migraine medications, but the Seroquel would mess with any of them.  Could also be you were not on the right dosage for you or you didn't stay on them long enough.

My suggestion would be to see another doctor.  Whoever ordered all those expensive tests doesn't seem to understand migraines, especially when it comes to medication.  If I could make a suggestion, try the Topamax again, slowly increasing the dosage.  If you change it too quick, you tend to get more of the side effects.  Topamax works best used with an antidepressant, like Paxil, but I personally use Effexor XR.  I find that it is more action oriented.  And, please, don't give up on the Klonopin.  I have used it for years and it works really well at controlling my anxiety.  Perhaps, though, maybe you could take half in the morning and half at night.  You might have better results that way.

I know you feel like you are in a really bad place right now without any ray of light, but I think if you can find another doctor, and do some homework before your appointment, you are bound to get some much need relief.

Jest my opinion.  Let us know how it goes.

Leigh Ann cool


"The weather is here, I wish you were beautiful."
                                             - Jimmy Buffett


Littlemissheadache
New Member


Date Joined Sep 2005
Total Posts : 3
   Posted 9/2/2005 9:55 AM (GMT -6)   
Thanks for the new ideas. I will definitely consider everything you guys have said. REALLY! I am going to see an eye doc today about Ocular Migraines and check the possibility of a crushed optic nerve. Will answer questions and have more to tell you when I get back...Stay Tuned for more :o)

Little Miss Headache

Pegasis
Regular Member


Date Joined May 2005
Total Posts : 118
   Posted 9/3/2005 12:22 AM (GMT -6)   

Hello Littlemissheadache--

I had Cushings Disease. I know that it is VERY RARE. It was estimated that I had it for about 8 years before I was finally diagnosed. (My offending tumor was successfully removed in 1997.)

Please tell me what test or tests were done to see if you had it. 

What kind of doctor (What specialty) first suspected Cushings? Were you seen by an endocrinologist?

I, too, take both Topamax and Effexor XR. I also take Elavil aka Amitriptyline. 

The others are giving you good advice about your migraines. I'm curious about the Cushings.

~~Pegasis yeah

 

 


Littlemissheadache
New Member


Date Joined Sep 2005
Total Posts : 3
   Posted 9/3/2005 8:24 AM (GMT -6)   
I will definitely check it out. Thanks very much Steve! :o)

Hi Pegasis,
Thanks very much for responding. As much as I didn't want to find anyone suffering, but I was really hoping to talk to someone with Cushing's Disease. My heart goes out to you hun. I still think I have Cushings. I know its very rare, but I fit all pieces. Were you actually tested for it and came back negative? My doctor was actually just my MD. You can look up info on him. His name is Dr. Baljit Bal. GREAT DOCTOR! He is an Internal Speicalist at the Cleveland Clinic. I spent 45 min. with him explaining my whole situation, symptoms, history, and everything. Cushing was the first thing he thought of. He did not tell me that though. He told me that there is a disease out there that fits most of my symtoms, like the "Buffalo Hump." I looked up "Buffalo Hump" and found Cushings and some of the tests that he was running on me. Such as the 24 hour urine collection, to ensure that my Pituitary Gland was not putting out too much Coritsol. He also took 4 vials of blood to check my Thyroid, overall blood count, iron levels (animia {sp}), Liver, Kidney, Electrolites, and blood sugar. All tests came up negitive!

You and my close friend that is a medical transcriptionist in NY has recommended an Endocrinologist. I am going to look that up next. :o) I don't even know what that is.

Everyone is giving great suggestions, I am investigating all of them. I will keep you posted. Thanks again. :o)

Little Miss Headache

EYE DOCTOR UPDATE: spent one hour with me, did tons of tests I have never even seen before and I learned that everything with me eyes and optic nerves are fine. I just need a slight perscription. Not even strong enough to give me a headache if I just go with out.

Pegasis
Regular Member


Date Joined May 2005
Total Posts : 118
   Posted 9/3/2005 2:23 PM (GMT -6)   

Hello, Littlemissheadache,

I am not ignoring you. I'm trying to find out how you and I can communicate about Cushings without using the migraine forum. Be patient. I WILL be in touch--SOON.

~~Pegasis yeah


Pegasis
Regular Member


Date Joined May 2005
Total Posts : 118
   Posted 9/6/2005 3:41 PM (GMT -6)   

Hi Littlemissheadache,

I really want to talk with you personally by e-mail. I've asked Sara how to do that. As soon as I get a response from her, I'll get in touch with you.

In the meantime, please log onto www.CSRF.net

There are many things of interest there, but please begin at tests, or testing. There are newer tests that are more accurate than the ones you had. An endocrinologist is the specialist you need to see. They work with the hormones of our body. Also---please don't be alarmed if you see reference to pituitary tumors being at the base of the brain. They are usually accessed from the nasal area.

I want to tell you more.......But this will get you started. Good luck dear.

~~Pegasis


tysmyboo
Veteran Member


Date Joined Dec 2004
Total Posts : 921
   Posted 9/6/2005 5:48 PM (GMT -6)   

Info has been posted...

Pegasis...email me, please. Would like to speak with you.

Sara



Sara-Migraine/Headache Forum Moderator
 
Thanks for Visiting HealingWell.com


Pegasis
Regular Member


Date Joined May 2005
Total Posts : 118
   Posted 9/7/2005 11:33 AM (GMT -6)   

Hi Littlemissheadache,

You can now e-mail me. Look all the way to the left of this message between where it has

Registered Member and Date joined.

You see that some of the pictures are not colored, but the envelope IS?

OK, click on the envelope. That will give you my e-mail address.

Send me an e-mail with your e-mail address and I will get in touch with you about Cushings.

~~Pegasis yeah

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