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Living Hell Daily

Before I start I would like to make it clear that I have been through most basic ideas of the cause of my issue.. like tension headaches, stress, etc..

For the past year and a half I have been in a living hell... I have these unexplained symptoms that are severely impacting my quality of life. I have been to several doctors, GI doctors, Neurologists and even the ER a few times. I have Xrays, MRI, CT scans and even a colonoscopy. (I am only 32 btw).

Basically, I always have this weird dizzy feeling in my head, very fatigue or vertigo like... to the point where I always feel like my head is spinning and I have occasional headaches with it. It is so bad at times that all I can do is just lay down and let my life waste away.

Below is a copy of the sheet I have made for my doctors... I feel like they don't even bother reading it and list me a possible cause off the top of their head:

Do me a favor and read this in its entirety before making any conclusion... I printed this because I want you to know all of this information – not just pieces of it.
1. VERTIGO like symptoms
2. G.I. (GERD) like symptoms
  a. Chest pains / pressure
  b. Gas
3. Occasional swollen lymph nodes in neck / back of head
   a. Hard lumps where lymph nodes are.
   b. Come and go over a period of a few days or a couple weeks
4. FATIGUE!!!!!!!!!!!!!! This is becoming excessive and life impacting!
   a. Dizzy
   b. Weariness
   c. Spinning head feeling
   d. Lethargic
   e. Always tired / do not feel like doing anything at times
5. Constant Dizziness (very random but extremely common)
   a. I feel like my head is in the clouds / lightheaded
   b. Spinning sensation like I am about to nod off to sleep / swaying
   c. Occurs in bed, at computer, when reading, when standing... VERY RANDOM
   d. Long lasting, sometimes for hours or even an entire day – sometimes days
   e. Feeling I am about to fall or moving when I am not
   f. Occasional feeling I want to sleep during the day
   g. Never ending
6. Nausea / Eating issues – THIS IS BECOMING AN ISSUE AS WELL!!
   a. Hard to find food that doesn’t make me feel bad. Makes eating difficult.
   b. Occurs more often than not
   c. Disorientation
   d. No vomit (yet) though I have the urge to at times
   e. Meats, dairy and some breads make it worse (but do not CAUSE it to start)
   f. Many berries and fruits cause me no issues and often help with the nausea a bit.
7. Shooting head pain / Fever
   a. Seems more like a sharp pulsating pain in head
   b. my right side and back of head
   c. occasional fever, random every few days
8. Blurry vision
   a. Every day or 2, sometimes many times a day, sometimes none for several days.
   b. No warning it is going to happen
   c. Usually occurs with dizziness / nausea – sometimes headache.
9. Full body hot flashes
   a. Becoming more common, enough to make me sweat – now day and night
10. Occasional numbness in extremities… legs, arms, etc…
   a. Almost described like a weakness – body part is not as strong or as functional
   b. Once every few days
11. Unable to concentrate / think clearly
   a. Literally
   b. Often forget simple things (like using soap when in shower)
   c. Mind is wandering more often
   d. Mild confusion at times
12. Unbalanced
   a. Hard to walk straight at times
   b. Clumsy with extremities (mistyping, pressing wrong buttons, etc…)
13. Feeling I am not “All there”
   a. Almost like I am somewhere between awake and sleep
   b. Often triggers anxiety
14. Tinnitus
   a. Mostly right ear
   b. Often a high pitched squealing sound
   c. On occasion there is a low pitched rumble, like a car running outside.
Other things that I am unsure if related:
1. Rash near shoulders / upper arms, and legs with pimples (they have bright white solid mass inside like zits) – They may just be that – zits, but throwing this out there. Pretty much anywhere my clothes touch me.
2. Feeling that I cannot empty myself after going to pee – will use restroom and be back in restroom a minute later because I feel like I still have to go. This can happen several times in a row, usually when trying to go to bed.

What has been done:
1. MRI of head – no tumors or anomalies found
2. Magnesium and B2 regiment – appears to have no affect
3. Heart stress test – All normal
4. Stopped ALL medication – no change
   a. Alprazolam -  short term anxiety issues
   b. Zolpidem – help sleeping
   c. Meloxicam (after ibuprofen was stopped) – for the nausea
   d. Ibuprofen (on occasion) – nausea and headaches
   e. Prilosec – long term GI
   f. Cymbalta – Anxiety / head pain
5. Temporarily altered eating habits –meats and dairy cause nausea and fatigue to get worse, but no change to other symptoms:
   a. No meats
   b. No dairy
   c. No canned foods
   d. No fast food
6. Blood test for basic diseases / levels – no anomalies
7. Was placed on steroid regiment for a week – no help
8. Taken vacation (involved no computers or electronics)
9. Medication that I was previously on (but no longer prescribed): Paxil, Zoloft, Viibryd, lexapro
10. Anxiety / Stress meds have no effect.
11. Colonoscopy and endoscopy to investigate digestive tract after possible threat of appendicitis


Other things to note:
1. I am in a living hell
   a. Symptoms cause me to have little or no motivation to do anything
   b. Fear something really bad is about to happen when no help is nearby
   c. Feeling that others not taking me seriously, and I am going to die because of that.
   d. Although it does not happen daily, when all of the symptoms occur at once I feel like I am literally about to die.
   e. Feel sick every day (especially from dizziness, nausea and just eating)
   f. Slow rate of diagnosis gives me little hope, gruelingly slow, another reason I think I am not being taken seriously.
   g. My quote “I feel like I am half dead all the time…”
   h. I am weary about starting a relationship or even looking for anyone because:
      i. I feel like crap all the time
      ii. Who wants to date someone that could possibly have something serious or fatal and not know what it is??
2. The really bad symptoms come and go so quick that if I were to try to go to the ER they would be gone before they got to see me (this has happened already), which makes an emergency trip a useless, expensive option for me.
3. Had absolutely NO headaches before symptoms started (aside from having the flu)
4. I primarily drink several cups of water daily, occasional tea - no coffee, no soda, no sports drinks
5. Don’t smoke anything
6. Occasional alcohol (once a month or 2) – seems to have no effect on symptoms
7. Work a lot in front of computer screens; however, symptoms occur even when not near any electronic devices.
8. Have been exposed to the following climates / environments with no change to symptoms:
   a. Colorado front range (Denver) dry, wet, cold and hot 5,000ft
   b. High mountains (12,000+ ft) dry and cold
   c. Utah – 4,000 ft dry
   d. Florida – at sea level, high humidity, extremely hot
9. Symptoms do not seem to escalate or appear when driving, except nausea
10. Symptoms are causing me to have panic and anxiety issues
   a. I do have anxiety and it is controlled well, lately I get anxiety after the symptoms start, not the reverse, the      symptoms are not starting from my anxiety.
11. Impacting my work performance
12. Symptoms have been persistent for 6 months or more, but present for over a year.
13. Teeth / gums have been deep cleaned recently
14. I have a pretty constant level of stress… not intolerable but noticeable, has not changed for years.

I just want to know what is wrong with me and work on fixing it if possible.
I am tired of going in circles with everyone, my life is being impacted.
11 Responses
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6007588 tn?1378289591
Shingles.All your symptoms are right on a bad case of it. That's all I'm gonna say, other than...

Be well and keep me posted!

Dix
Helpful - 0
Avatar universal
I'm so sorry you're having to live with all these symtoms and don't know what to do next......I, too, started having all of your symtoms at age 29 in 1978......many, many doctors, neurological work-ups  & nothing serious showed up.  I would suggest a good ent doctor and an alternative dr. who uses antifungal meds and allergy testing.  I had lots of food allergies, enviromental allergies and chemical sensitivities to almost everything including make-up and scented shampoos which caused nausea & dizziness.  There are doctors throughout the U.S. who treat patients with severe auto-immune diseases using low dose immunotherapy (search online for ldi immunotherapy.)   I will be consulting with one near me soon. You will get better, I did but I have to be very careful with my enviroment and what I put into my body (meds, food) etc.  Keep the faith, I've lived in your hell and it's no fun at all.  I found very little help from traditional medicine and most people cannot relate to what you're going through. Let us know how you're doing. Good luck!!!!!!
Helpful - 0
4851940 tn?1515694593
Did any of the doctors tell you the results of your xrays and scans, whether you arthritic joints and problems with the spine?

In your earlier posting I wasn't sure whether you meant that you are taking B2 or B12 and I noticed that in a reply to silverfox you do say that you take B2.  

With you feeling fatigued all the time, as well as the other suggestions I gave regarding what may be the cause of your fatigue, when you get any more blood tests taken ask the doctor to check you out for Vitamin B12.
Helpful - 0
Avatar universal
pwilson962,

Thank you for your reply!

From Worst to not so bad:
1. Fatigue
2. Nausea
3. Veritgo
4. dizziness
5. blurry vision
6. hot flashes
7. head pain
8. Unable to concentrate
9. Feeling I am not all there
10. GI
Everything else is minor...  

I think I will be seeing an ear, nose & throat Dr as many others have suggested it.

Your idea of making making my own medical business plan is a great one, Thanks!
Helpful - 0
Avatar universal
jemma116,

Thank you for your reply.

My Xrays were of my chest/heart and abdominal areas. The MRI was of my  head/neck and the CT scan was also done on my abdominal area...

I have had recent blood tests with no signs of lymphoma; however, I do not think that they were actually checking for that.

You do have several great ideas.

Lots of the symptoms happen simultaneously. Fatigue with the numbness, blurry vision and nausea. Any thoughts on if it could possibly be all related to nerves?

You are correct about panic, I have had anxiety most of my life and I am quite familiar with anxiety and panic attacks. I must say that having all of these wacky symptoms does not help it at all, but on the other hand have been under control quite well considering. I do take Alprazolam when needed (which has no affects on my symptoms btw)

I have discussed ideas of diabetes, stroke and cancer with my doctor... we have so far not found anything (though I can not rule anything out yet as we have not done formal tests for any of the above.
Helpful - 0
Avatar universal
Silverfox67,
I am actually currently ion a magnesium (250mg) and also a B2 (200mg) daily supplement.  During a recent (blod test (less than a month ago) I also found I was low on potassium... have been eating lots of bananas since then :)

Thank You for your suggestions.
Helpful - 0
Avatar universal
Hello, My BMI is 22.0
Thanks for your help
Helpful - 0
Avatar universal
    Your symptoms sound like a Magnesium deficiency.  You say you have ruled out everything possible.  perhaps a natural supplement would help.  It seems we do not get enough Magnesium from our diets (even the healthiest diets).
   Some of the symptoms of Magnesium deficiency are:
Lethargy, Anorexia or loss of appetite, Nausea and Vomiting, Weakness, Muscle cramps and spasms,  Vertigo, Dizziness, Irregular heartbeat,  Depression,  Chronic Fatigue Syndrome, Sleep problems,  Hypertension, Asthma,  and several others.

     Do you see yourself in this list?   You might want to try a Magnesium Glycinate supplement.  A Potassium supplement wouldn't hurt either.
      Ask your doctor about it if you don't feel comfortable self-prescribing.   But, even little old ladies take these supplements on a regular basis.  (I do).
Helpful - 0
Avatar universal
What is your BMI?
Helpful - 0
Avatar universal
Break down your list from the most serious issues to the least. They all may not be related. Go see a ear, nose, throat specialists about the vertigo. He/she may be able to resolve several things on the list. Anxiety is probably from your feeling out of control.  Look at your health as a business with problems. If you start with just the vertigo, let the Dr ask you if you have certain symptoms. If you come across as hysterical or hit them with too many symptoms, they will write you. If you start there and feel relief, then move down the list that the ent didn't resolve. Now take a deep breath and write out your new medical business plan. Good luck.
Helpful - 0
4851940 tn?1515694593
When you say that you had xrays you do not say of what.  
Arthritic problems in the neck can cause dizziness and headaches.

Inner ear problems can also cause dizziness and feelings of nausea.  Unfortunately, there is no cure for tinnitus (noises in the ears).   If you have congestion and sinus or throat problems that can also cause pressure in the ears and make you feel ill.  Do steam inhalations if you have congestion.
High or low blood pressure can cause dizziness with headaches.

For your acid reflux you should be taking something for that.  If your last medication did not help, there are other ones that your doctor can prescribe for you.  Pantoprazole seems to work for a lot of people with GERD.

Getting viral or bacterial infections can also make you feel very fatigued.
Low iron levels too can make you feel very tired all the time.

If you have not had a test done for Helicobacter Pylori, that may be a good idea.  The most reliable way is by have a breath test done.

Also checking you out to see if you have any parasites.

If you are having a problem with emptying when going to urinate, you do need to get your urine checked out for any tract infection and if that is clear then your prostate needs to be checked.  Urinary infections can cause confusion and not being able to concentrate.

For eye problems with the blurry vision, this can be caused by diabetes if the sugar levels are not controlled properly, by glaring at the computer screen for too long, being tired, and also needing corrective vision glasses.  Get your eyes checked out.  You can get glasses for computer work these days.

With your numb sensations in your limbs that could be from pinched nerves.  If you experience numbness in your arms that may be coming from problems in the neck.  Leg numbness would be from problems in the lower spine.  As you work at your computer, make sure that you have a good sitting position with the feet flat on the floor and your monitor at a good height so that your are not looking down at the screen.  The sharp pains that you mentioned may all be postural related by the way you sit and use your computer.  Get adequate breaks, 5-10 minute breaks from the computer every hour is better than working solidly at it for hours.

If your glands are still swollen, and if you have not a blood test to find out what is causing this, perhaps you could ask your doctor to do a blood test to check for Hodgkin's or Non-Hodgkin's Lymphoma.

I do feel by what you have written is that you do seem to get panic attacks.  Especially when you say that by the time you would go to ER the symptoms would subside.

Hope you get on OK.

Helpful - 0
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