Still researching for an answer to my headaches

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tmjpain
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Date Joined Oct 2008
Total Posts : 2023
   Posted 8/8/2010 5:50 PM (GMT -6)   
My docs will be looking into Normal Pressure Hydrocephalus now. Anyone else gone this route. You can google it for an explanation.
I have continuous bilateral temporal headaches and it is severe, always.
It's been ten years of doctors, treatments, meds, tests and nothing.
Opoids don't even help my pain, nothing works.
I just keep ice on my head.
Can anyone help me??
 
I am always on the chronic pain forum but always reading here incase I find out something I have not been checked for. I do not have a PFO. Nothing shows up on the ct or mri, but this friday I will have an mri with contrast.

SUZANE

>

God has a plan but it will be on his time.
I must be patient and take it one day at a time.

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SmurfyShadow
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Date Joined Dec 2008
Total Posts : 2386
   Posted 8/9/2010 2:18 PM (GMT -6)   
Theres a bilateral temporal artery. Has a cardiologist looked at you? Sometimes, heart problems can cause migraine headaches. Have you tried a teaching hospital? They always have the latest training and equipment. CBC, chem 20 etc should be done to check for cell counts. A neurologist would be great for you
 
Smurfy Shadow/Desirèe 
DX: Wegener's Disease, Migraines, Diabetese Type II, PCOS, Lactose Intolerant, Benign Heart Murmer, Depression, Asthma, Asperger's Syndrome, Necrotizing Gramultous Inflamation in eye, A.D.D., Acid Reflux, Tumor Behind the Eye, Carpal Tunnel, Fibromyolgia, Clasterphobic, Arthritis, Anxiety
Medications:  Tri Nessa, Percocet, Metformin, Prednisone, Cingulair, Albuterol, Pro-Air, Morphine, Rolaids, Zofran, Compuzeen, Refresh Plus Eye Drops, Percocet, Immuran, Alvesco, Allerga, Gabapentin, Visteral  PRN: Epi-Pen, Albuterol Nebulizer, Benedryl Undergoing Chemotherapy Taking Lorazepam (Ativan) For MRIs and Anxiety, Surpressed Immune Sytem

tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2023
   Posted 8/9/2010 3:08 PM (GMT -6)   
Yes done all that and cleared. Haven't been admitted to hospital but my GP has been ordering all the tests. Looking into an LP now and cranial pressure monitoring. Neurologist x2 had nothing to offer. My headaches are not migraines.
Thanks for the ideas though. i hope I hear from others as I continue my search. to me it doesn't make sense  to have the same pain in the same place for ten years. I have also had all the work done for tmj and that is fine now but still have the pain.
SUZANE

Annuk
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Date Joined Jan 2006
Total Posts : 1308
   Posted 8/9/2010 3:33 PM (GMT -6)   
What makes your Neuro think you are not having Migraine?? I do know how you feel, I have been in constant pain for the last 22 years!!! Thankfully it was a Neuro who was a Headache Specialist who finally found out after 18 years what was actually wrong with me!!! Have you seen a Headache Specialist?

Have they tested you for CSF Pressure? (Cerebral Spinal Fluid) as a decrease in this can cause continuous headache! A Headache Specialist would be the best person to sort this out for you!

take care

Ann
Co-Moderator of the Migraine/Headache Forum

DX: Hemicrania Continua, Chronic Migraine, IBS, Allergic Rhinitis and Heart Murmur

Meds: Imigran Injections, High Flow Oxygen, Mebeverine, Lansoprazole, Nasonex and Clarityn

tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2023
   Posted 8/9/2010 5:37 PM (GMT -6)   
The last neurologist I saw was the top specialist in adult headaches. She said my symptoms were not typical for migraines. Like I mentioned in my first post, we are starting to look into Normal Pressure Hydrocephalus, you can google this for the explanation.
 
So sorry to hear you have been suffering for so long as well. It is very debilitating. What did they find with you and what helps you. I can't even get my head off the pillow, it feels like it is going to blow up!!
 
Take care and thank you for your response.
SUZANE

SmurfyShadow
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Date Joined Dec 2008
Total Posts : 2386
   Posted 8/9/2010 6:17 PM (GMT -6)   
Your neuro wouldnt like me because I'd look at her wearing my scrubs and say "typical migraines or not everyone is different, the fact remaines I do have migraines and you will get me a second medical opinion and it will be now."


By law, you can get second opinions, or as many as it takes to get the adequate help.

I'd get a new neuro, personally.
 
Smurfy Shadow/Desirèe 
DX: Wegener's Disease, Migraines, Diabetese Type II, PCOS, Lactose Intolerant, Benign Heart Murmer, Depression, Asthma, Asperger's Syndrome, Necrotizing Gramultous Inflamation in eye, A.D.D., Acid Reflux, Tumor Behind the Eye, Carpal Tunnel, Fibromyolgia, Clasterphobic, Arthritis, Anxiety
Medications:  Tri Nessa, Percocet, Metformin, Prednisone, Cingulair, Albuterol, Pro-Air, Morphine, Rolaids, Zofran, Compuzeen, Refresh Plus Eye Drops, Percocet, Immuran, Alvesco, Allerga, Gabapentin, Visteral  PRN: Epi-Pen, Albuterol Nebulizer, Benedryl Undergoing Chemotherapy Taking Lorazepam (Ativan) For MRIs and Anxiety, Surpressed Immune Sytem

tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2023
   Posted 8/9/2010 7:37 PM (GMT -6)   
I've seen two neuro's.
I have tried all the meds anyways and nothing helped.
SUZANE

SmurfyShadow
Veteran Member


Date Joined Dec 2008
Total Posts : 2386
   Posted 8/9/2010 8:04 PM (GMT -6)   
They are missing something, that I know. Has any biopsys been performed?
 
Smurfy Shadow/Desirèe 
DX: Wegener's Disease, Migraines, Diabetese Type II, PCOS, Lactose Intolerant, Benign Heart Murmer, Depression, Asthma, Asperger's Syndrome, Necrotizing Gramultous Inflamation in eye, A.D.D., Acid Reflux, Tumor Behind the Eye, Carpal Tunnel, Fibromyolgia, Clasterphobic, Arthritis, Anxiety
Medications:  Tri Nessa, Percocet, Metformin, Prednisone, Cingulair, Albuterol, Pro-Air, Morphine, Rolaids, Zofran, Compuzeen, Refresh Plus Eye Drops, Percocet, Immuran, Alvesco, Allerga, Gabapentin, Visteral  PRN: Epi-Pen, Albuterol Nebulizer, Benedryl Undergoing Chemotherapy Taking Lorazepam (Ativan) For MRIs and Anxiety, Surpressed Immune Sytem

Annuk
Veteran Member


Date Joined Jan 2006
Total Posts : 1308
   Posted 8/10/2010 2:43 AM (GMT -6)   
Hi Suzane,

I have responded to you on Chronic Pain too! I have Hemicrania Continua as well as Chronic Migraine. HC is continuous pain on one side of the head only, with exacerbation's of that pain up to 5 per day!! These exacerbation's can be excruciating! The only medication that wipes the pain is Indomethacin, which I was able to take for around 18 months until they damaged my gastro-intestinal tract and I had to stop!

Generally speaking Imitrex and Oxygen should not work for HC but they work well enough for me to bring the pain down to a copable level, but they do not take it away!! However I could not survive without them at the moment.

Like you I have tried many preventatives to no avail. HC is classic in that nothing works for it except Indomethacin!!!! I am very fortunate to be able to be waiting to have an implant which will sends a small electrical charge to block the pain pathway, and has shown very good results in HC. This implant is called ONSI (Occiptial Nerve Stimulator Implant) and is also used in other headaches including Migraine and Clusterheadache when nothing else works!

As I have both HC and Chronic Migraine I am hopeful for some real relief for both with this procedure, I am on the surgical waiting list at the moment!!

I have looked up NPH and note that headache is NOT usually a symptom! However, I am pleased that you have a Consultant that is thinking outside the box where your headaches are concerned enough to look into everything. I know many Migraine sufferers who are not atypical of migraine and who no medications work for so am a little surprised that Your Neuro has ruled that out!

Hang in there, I pray that they will find something to help you very soon!

take care

Ann
Co-Moderator of the Migraine/Headache Forum

DX: Hemicrania Continua, Chronic Migraine, IBS, Allergic Rhinitis and Heart Murmur

Meds: Imigran Injections, High Flow Oxygen, Mebeverine, Lansoprazole, Nasonex and Clarityn

tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2023
   Posted 8/10/2010 6:12 AM (GMT -6)   
Thank you Ann. I will mention these things to my doctor.
It doesn't seem that they do those implants here in Ontario as I have been asking about them.
I have had occipital nerve blocks done with no effect on the pain.
I know headache is not a symptom of NPH but a doctor was quite adament i have it looked into.
My pain is continuous pressure in both temples, severe at all times. I cannot sleep.
Thanks for taking the time to answer me.
 
take care
SUZANE

Annuk
Veteran Member


Date Joined Jan 2006
Total Posts : 1308
   Posted 8/10/2010 6:26 AM (GMT -6)   
Hi Suzane,

Has your Doc considered Temporal Arteritis?? (Giant Cell Arteritis). This can commonly be mistaken for Migraine!!! A simple blood test that is specific for this can tell whether you have this or not!

It's good that you are looking into NPH as well! Do you get any relief from anything at all no matter how small? Say Steroids?

take care

Ann
Co-Moderator of the Migraine/Headache Forum

DX: Hemicrania Continua, Chronic Migraine, IBS, Allergic Rhinitis and Heart Murmur

Meds: Imigran Injections, High Flow Oxygen, Mebeverine, Lansoprazole, Nasonex and Clarityn

tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2023
   Posted 8/10/2010 6:40 AM (GMT -6)   
It's not TA.
Nothing helps except freezing my head with ice.
SUZANE

Annuk
Veteran Member


Date Joined Jan 2006
Total Posts : 1308
   Posted 8/10/2010 10:26 AM (GMT -6)   
Have you had ACTH and PCTH blood tests? As you probably know these test for Pituitary problems. It is possible to get a nasty continuous headache from a Pituitary adenoma, which is treatable. I know because I have one!!

My tumour was quite benign as most Pituitary tumours are and was causing infertility too! Just a thought!

Hang in there, take care

Ann
Co-Moderator of the Migraine/Headache Forum

DX: Hemicrania Continua, Chronic Migraine, IBS, Allergic Rhinitis and Heart Murmur

Meds: Imigran Injections, High Flow Oxygen, Mebeverine, Lansoprazole, Nasonex and Clarityn
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