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Mystery

It started when I woke from a nap 8 years ago and had tingling across my forehead and felt a little light-headed & nauseated. That stayed with me for a year. The first Doctor I saw told me that it was depression and/or anxiety. He prescribed Xanax & a Psychologist. Neither worked. After the first year, the tingling in my forehead had progressed beyond my forehead and turned into a tightness 24 hours a day. The nausea was worse, had a hard time concentrating, some dizziness & my vision seemed a little hazy. And when it hit hard, it was debilitating and I couldn't function. About 3 years ago to present, it has progressed exponentially. There is severe tightness throughout my entire forehead, ears, nose, cheeks, jaw, scalp & neck. Inside of nose tingling, outside is numb. Ear muscles are completely tight. Nausea is worse. All worse when I sit or lay down. And laying down straight puts pressure on my nose and makes it all worse. I am also extremely susceptible to car sickness. When motion sickness happens, I'm disabled for a week. I have never had pain though - which makes it difficult for Doctor's because they all believe I have Headaches of some sort. I've had 2 brain MRI's, CT of the brain, neck, back & chest MRI's. Every blood test in the world including rheumatological. Sinus surgery. 9 top Neurologists, general doctors, acupuncture, acupressure, Chinese herbs, SSRI's, Gabapentin, Cymbalta, Lyrica, Nor & Amatryptilines, migraine meds etc. etc...


I had to resign from my job of 15 years. I continue to be on an extensive search for Doctors that can help in any way. We've been to some of the top people in the industry and had several diagnoses and treatment options.

1. Diagnosis: Cervicogenic Headaches - Recommended specific Physical Therapy. Tried these session twice.  
    Both times made me completely sick & non-functional for a week. They also prescribed Celexa and a
    Psychologist. Neither worked.

2. Diagnosis 2: New Daily Persistent Headaches - Recommended a program where you except your fate and learn  
    how to live with it. & Amitryptiline. Neither worked.

3. Diagnosis 3: Migraine Headaches - Recommended Cefaly device and cymbalta. Neither worked.

The next medication has brutal side-effects so I thought I would ask you guys if anyone has had anything similar to mine and found any relief. Thank you.
10 Responses
1530171 tn?1448129593
Hi andyem.

I'd say pretty challenging for you AND your doctors (except they don't have to endure the suffering).

You may want to consider to do a trial with Methylocobalamin, 5-Methyl tetrahydrofolate or SAMe (S-Adenosyl methionine) which is  involved in methyl group transfers.

How is this pertinent to you?
Well, perhaps your neurological types (as above) of folate and cobalamin are low and/or histamine is not broken down and it accumulates in your body.
Have you had your histmine levels checked? (blood test)
TMG also increases methylation & increasing the deactivation of histamine.

Have you had a homocysteine CFS test to check for Methylocobalamin, 5-Methyl tetrahydrofolate levels?
Standard MMA tests won't show a deficiency in these as they only check the other forms of B12 and folate.  

Also, if you lack methyl groups (SAMe supplies methyl groups )- there have been about 400 reactions identified which are dependent on methyl group transfers- homocysteine levels will build up also in the body, which will potentially lead to serious conditions like heart disease, poor circulation,
neurodegenerative disease and on and on...

If you deside to do a trial using any supplement I mentioned above, do so in the smallest dose suggested, to start.

Another constitutional supplement for many, including myself, is MSM, which provides the cells with organic sulfur, one of the few oxygen transporter agents to the cells. Inexpensive, tolerated by most and effective. I take it in powder form. Starting dose is 1/4 teaspoon x 2 daily with juice or water. Gradually build up to 1/2 t x 2 daily. It may also help with methyl group transfers, however, I have read no pertinent studies on that.

Causative Factors that would play a role in all this:

1. Diet, malabsorption issues, gut dysbiosis.
2. Low gastric acid levels
3. Medications like acid blockers, contraceptives, etc.
4. Genetics (predisposed to high homocysteine, MTHFR mutation etc.)
5. Heavy metals toxicity.
6. Hyperthyroid or hypothyroid function.
7. Viral load.
8. Yeast overgrowth/candida/leaky gut syndrome
9. Adrenal fatigue
10. Hypoxia, hyperventialtion

Whatever you can rule out from this list or get it corrected, it will be a step in the right direction.

I'm sorry but your diagnoses and treatments offered by "top people in the industry", are very disappointing, to say the least.

For your severe motion sickness symptoms, you can try organic ginger capsules, sold in health food stores.

I hope this helps you somewhat and please feel free to comment or ask questions, however, my comments and suggestions are not intended to replace medical advice.

All the best.
Niko






Avatar universal
Thanks so much for looking into this and assisting Niko.

I have had:

Vitamin B12 + Folate - both normal ranges
&
Methylmalonic Acid & Homocysteine, cardio(?) - also normal ranges

I haven't had my Histamine levels checked but I just made an appointment with an allergist tomorrow - so we'll see. Should I still try MSM? I can't explain how debilitating this is but it's difficult to even respond to this...

Thanks again,
Andy
1530171 tn?1448129593
Andy your "normal" levels of B12 and Folate only indicate serum levels of
cobalamine and folate and NOT their methylated forms as I mentioned, which are also their neurological forms.
A test of homocysteine levels in the cerebrospinal fluid (NOT SERUM) is a reliable test for nervous system deficiency, whereas the MMA urine test is not.
That means that you may have a (neurological) deficiency in these, as the regular forms cannot cross the blood-brain barrier.

If  I were you I'd do a trial starting first with MSM powder -I buy the one for...horses at about $60.00 for 5Kg and I share with other people, it's 99.7% pure and supplies organic sulfur for increased oxygen delivery to the cells. It's the same as the one for humans, except cheaper! Marketing.
After a few weeks you can add SAMe
and finally as an adjunct, you can add B6, methylocobalamin,
5-Methyl tetrahydrofolate and TMG -which I forgot to mention yesterday.

Extra virgin coconut oil is something I take everyday for general health
and I highly recommend this for brain health as well.
It is a superior form of energy and should you have any impairment in glucose supply to the brain, it would be the ideal fuel substitute, as it is one ot the few substances that can go through the brain-blood barrier.
Its medicinal properties make it the top rated Functional food.
Anti-inflammatory, anti-viral,anti-parasitic, anti-fungal, anti-microbial-
and it works better than most medications! Dare I say more?

Also to save you from some potential mis-information/flawed allergy testing/false negatives/false positives,consider doing Dr. Coca's Pulse test.
It's a free download and it takes a week of monitoring and recording all your food and drink intake and recording your pulse at various times each day before and after meals and upon rising and at bedtime (I think ).
It will indicate allergies and sensitivity to anything ingested, including delayed, or hidden reactions.
It will also indicate certain allergies and sensitivity to gluten, wheat and grains, which might be missed by standard allergy tests. See below FYI:

Look into Gliadin test (urine), by Cyrex labs. They test 12 forms-not just the alpha ordered by most doctors- of gliadins regarding gluten intolerance (not necessarily digestive).
Now they can also test which part of the body is affected!

You should read the book "Wheat Brain" , by Dr. Dave Perlmutter.
I attended his lecture at a conference a couple years ago and this guy really knows his stuff!

Well, I think I gave you enough ideas & suggestions to explore.
Stay strong and focused, (I know easier said than done), however, I understand how difficult it is-as I have been through similar circumstances in my own life- but you can definitely do quite a lot to improve your health status.
Let me know how things unfold.

Cheers,
Niko


Avatar universal
Get yourself checked for Lyme Disease.

it can present itself with many many different symptoms, including all the ones you have. just because you have a negative lyme disease test does NOT mean you dont have lyme. 50 percent of lyme disease blood tests are inaccurate

Avatar universal
Thank you Jjewelz1987. I was tested 3 different times from 3 different organizations - for Lyme & they all came up negative.

I also just went to the allergist that I mentioned above and everything was negative for any kind of allergy possible. She had my back covered with tests.

So frustrated. Just need to get back to being able to work.
Avatar universal
Andy, i do want to let you know that just because you tested negative three times for lyme doesnt really mean anything. lyme tests are very inaccurate and many people who do have lyme test negative for it. its unreliable over 50% of the time. false negatives are very common because the lyme actually suppresses your immune system, and doesnt make antibodies to it, which is what is measured in lyme disease testing. i would personally obtain the result of those lyme tests to see the results if i were u. even if you are making just a few antibodies to lyme they will straight up tell u its negative whicr
Avatar universal
which is rediculous because any antibodies currently being made at all obviously means its positive. their guidelines for diagnosing it and reading the results is rediculous.
1530171 tn?1448129593
IGeneX IS the golden standard for testing Lyme's.
Many doctor's follow IDSA protocols, which does not fully recognize chronic Lyme's disease, therefore, their interpretation of lab reports
is according to IDSA recommendations. You can see how this goes...

I live in Canada where there are NO Lyme's doctors left in the entire country!
There must be huge business, political and other interests, for all the persecusion of doctors who treat chronic lyme's disease, properly, and who are putting their patients' health ahead of any protocols dictated to them
by the governing medical authorities and boards.

Cheers.
Niko
Avatar universal
Thanks. My sister and a friend of mine both have lyme disease and are fully functional - with or without medication. Neither of them or anyone that I've ever researched with lyme disease would have 24 hour a day crippling tightness all throughout the face, scalp, ears & neck coupled with nausea. But thank you.
Avatar universal
Andyem
I know many many people with Lyme disease that have those exact same symptoms. I please ask you not to entirely dismiss it as a possibility. Lyme disease is capable of causing over 300,yes,300 different symptoms. *************** is the absolute best forum for asking people about your symptoms pertaining Lyme. I do not want to be overly pushy with you about this but I have years of experience with this and I ask you to please keep an open mind about possible Lyme disease.
God bless
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