What is going on with me? Not processing things normally, impaired cognition, memory problems,

Brain and nerves
1

Hello, 

About four-five months ago I started getting really bad "brain fog" along with some physical symptoms. It took me a while to be able to pinpoint what some of the brain fog entails: inability to concentrate, can't retain new information, can't do anything cognitively difficult, slower reaction time, memory issues, am not processing things normally. (if you're wondering how I am able to write all this now, I have dozens of my medical bills and tests out to help me). 

Examples of how bad my mental cognition is: hard to make toast, hard for me to figure out my way through public transport and airports (I am a very frequent traveller but find myself almost unable to get through it, alot that was familiar now seems so unfamiliar and foreign--I think this is the scariest part, forgot the meaning of a lot of words)

All that then caused insomnia and anxiety, then social anxiety and depression and apathy. This is because I am unable to hold conversations, make conversations, understand what is being said, ect. So I have completely pulled myself out of social situations (which is VERY odd since I am (was) such an extrovert). 

Here are the other symptoms that I have had on and off for the past four months (not in any order, and I am not sure which are related): 

-lightheadedness

-sensitive to some lights and sounds

-menstruation is completely out of whack

-random night sweats

-very dry skin/itchy skin

-rashes/break outs (worst skin i've ever had, and i'm only 24!!)

-bad sleep

-tingling/random pins and needles

-random ringing in ears

-very sensitive to cold

-very sensitive to alcohol (I stopped drinking completely now)

Something that I just realised two weeks ago, although I am not sure how long it has been there for, is muffled hearing. When I swallow, my ears don't clear. However, they clear when I close my nose and push out, but then get muffled right away. I also have had swollen lymph nodes in my neck for a long time. These two things could be related or might not be. 

I have seen two endocrinologists and two holistic doctors and am not exactly sure what to do next. Here are my tests that I have done:

-thyroid panel -- all okay (I am hypothyroid and have been taking armour for the past 4 years)

-Prolactin - a bit high but okay

-LH - normal

-Estradiol - normal

-Cortisol -- was very high, given hydrocortisone for 4 weeks, now it is all okay

-DHEA -- normal

-Testeosterone -- normal

-CBC : all okay, with a few just out of the normal range:

Hematocrit, MCV and MPV all a bit above

MCHC a bit low

-B12 -- normal (but given supplements and shot anyways)

-progesterone -- a bit low (taking this for past 3 months now, but only difference is I get my period on a regular basis now)

-vitamin D - was low, doc gave me a three months gel

-Pregnenolone - very low, started taking 30 mg but then got heart palpitations and stopped

-folate -- normal

-serotonin -- normal

-homocysteine -- normal

Apart from all of these tests, I have crossed out: gluten free, candida, lack of fish oil, low magnesium calcium and zinc,

I am not sure where to go from here.. I am out of a job right now because of this. I hope someone on here can help steer me in the right direction because I am so very lost. I am also too young and healthy for this to be happening to me!! 

One last thing that I thought I should mention is that I had a bad vaginal infection just before this started happening, which I took strong antibiotics for. Not sure if this is related, but worth mentioning. 

Thanks for all your help. Peace and love.  

 

2

Hi chasingthewind3,

I read what you had to say and while I am not a doctor I had an illness that has some simular symptoms of what you talked about. The illness goes by a number of different names including Intercranial Hypotension, Spontanious Intercranial Hypotension, or Spontanious Hypotension of the Brain. You should look these up on google to find out more. I had this illness and some simular symptoms  to yours are can't retain new information, memory issues, processing things normally, forgeting the meanings of lots of words. What the gist of the above illness is this. You have a leak or leaks somewhere in your spine. This decreases your spinal fluid. The lose of spinal fluid causes the problems of yours that I listed above. You're brain is surrounded by spinal fluid and helps your brain function properly. With a loss of spinal fluid you're brain does not function properly causing numerous problems exactly like the symptoms of yours I listed above. The problem with this illness if in fact is this is  what you have is that 99% of doctors don't have a clue. You should probably start with an MRI though this test by no means is perfect. 

This illness is also rare. It affects 5 in 100,000 people. 

Heres what I reccomend  to get started on this. Look up this illness on line and learn more. Talk to your doctor and bring this illness up. However, do not be suprised if your doctor has not heard of it.

Contact many neurologist  in your area and bring the illness up. If that is not to your liking try doctors in the biggest city closest to your home.

Pay attention to addition symptoms and right them down. Be as aware as you can to your condition improving or getting worse and try to document this even though I can truly understand that having memory issues will cause this to be diffucult. I had terrible memory issues.

And finally feal free to contact me with any concerns you may have,

Sincerely,

Michael

3

I echo what Michael has said! Get checked out for IH.

I am having the exact same symptoms as you & am 2y into my journey. I am waiting for results from my 2nd MRI as this is what I think I have too, but was misdiagnosed on my 1st MRI as I had some of the tell tale signs on scan, but no headaches. I now know, that you don't need headaches with this condition, it is just v common, but not always present.

Push for an MRI & raise this condition with your doc.

Good luck & keep us posted. Feel free to private message if you prefer.

4

Thank you both for your reply! 

I was going to say that I do not have regular headaches, so it is good to know that one can still have this condition without the headaches. 

I will bring this up with my doctor. Will keep this thread updated!

5

Hi Twinky, 

Please keep us updated on what the second MRI shows!

Thanks!

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Will do, but will prob be the end of July when I get the results. Nothing moves fast!

If you do get a scan, keep an ear out for the word 'chiari'. This is what I was told I have from the 1st MRI. I'm now not so sure that's right.

Michael has only just opened my eyes to this condition. I don't know I have it yet for sure. I'm sure you'll do some googling as I have been. Let me know of you find anything particularly interesting, or get any news yourself. It's nice to know you aren't alone in the meantime :-)

Are you in the UK?

7

Hi,

Your story has really hit me and being your age and being so healthy sounds so familiar.

I couldn't help but notice, you mentioned you had taken antibiotics in the final paragraph. I also have been in a very similar situation to you, I am awaiting mri results which I will hopefully get back tomorrow from an orphathologist. I'm not sure if you can read my story, posted over a year ago? (If you can please read) What sort of anti-biotics was it you were prescribed? I was diagnosed a 'floxie' from a herbalist doctor. After months of neuro tests, mri scans, doctor app and a&e visits no answers. I still have symptoms today!

Please check out the website floxiehope - if you feel this may be you, please get in touch. I can help you on the way to recovery. May I mention though, it wasn't fluroquinlines I was prescribed it was trimethoprim.

Kerry

8

Okay I will keep an ear out for chiari! 

Definitely nice to know I am not alone smile Have you been able to work during the two years that you have been trying to figure out what it is that you have?

I was in the Philippines, but have moved (back) to America to get this settled with the healthcare available to me as I am now without work.

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Hi, Your welcome! This is Michael. Keep me updated on things, happy to help out!

Sincerely,

Michael

10

Hi Kerry, 

I read your post. Apologies for all that you have been going through/have gone through. 

I've actually been reading a bit about being floxed. I don't remember which antibiotics I was prescribed, but I will find out within the next few days after I speak with my doctor who gave them to me. Would this show up on an MRI?

Take care!

11

Hi Kerry, I was wondering how your results went? 

Take care

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Hi All, 

Giving an update: had an MRI, everything came out okay except that I have mastoiditis. So I am on antibiotics for that. The GP said if I don't feel better within 48 hours then I will go see an ENT, which I think I will do anyways just to ensure I am getting the treatment that I need. 

If I don't feel better in the next five days, I was thinking I would go get a second opinion from a neurologist (the interpreter of the MRI was a radiologist who relayed the info to my chiro who gave me the prescription for the MRI). 

I have also sent my info in to an endocrinologist friend for a third endo opinion. 

Also, the antibiotics that I took for the infection a few months ago was metronidazole, so that rules out being floxed. 

Hope you are all well. 

Peace and love.

13

Hi chasingthewind3,

If you do in fact have intercranial hypotension MRI's are useless. I had between 20-30 MRI's and everyone came back normal. Heres the test you need that is probably best at finding spinal fluid leaks, it is called Radionuclide Cisternogram. Check with your doctor on this and research it on your own. I checked with a truly brilliant doctor and he recommended this. Again before proceeding with anything always check with your doctor and research it yourself. Because the illness is so hard to diagnous doctors will continue to run you through a number of ultimately useless test! Getting a number of opinions is always a good thing but remember I probably visited as many as 30 doctors before things became resolved. The more your question and dig for answers the faster you will get back to were you should be, 100%!

I also hope you are well,

Michael

14

Hi everyone,

Just updating you on my health!

I went and saw a counselor who recommended i see a psychiatrist. Since i had no conscious triggers, it made me cross out depression since i had very little understanding of the condition.

I got abattery of tests done and came out with clinical depression. Have been on 20 mg of prozac for two months and i am almost back to my 100% self. Totally unbelievble. This experience has changed my perspective on depression and mental illness as a whole.

The doctor says i will be on prozac for another 10 months to ensure i do not relapse. At this point i dont care what i have to take because nothing could make me feel worse than i did.

I wanted to thank you all for your help and suggestions. I am so happy this battle is over.

Peace and love always smile

15

It's great that you have updated this as lots of threads have no conclusion.

The other thing that occurred to me was that I hadn't asked if you'd had your thyroid antibodies checked to rule out hashimotos if you are already hypothyroid? I guess it's probably not relevant now if the Prozac has improved everything though & if it all maintains.

I'm really pleased that you are feeling better. It must be a relief to get your life, energy & functioning back!!

16

Hi Twinky,

I actually did get checked for hashimotos and it came out negative.

It is such an amazing relief. I am so glad I am finay getting better.

Thanks for everything!

Take care smile

17

chasingthewind3 here is my situation.  Somthings sould the same.

I joined this forum in hopes I could connect with others for hope.  Short story, at age 20 started getting periods where my brain could not focus scattered, out of it.  Loss of sensations to external world.  Made Engineering school very hard sometimes.  1985 age 23 out of school working now things got worse fast.

Full brain shut down.   Desperate I saw physiatrists.  Many drug experiments hospitals pushed my decline to super depths.   Drugs made it impossible to function.  Thoughts of ending it were big.

24 Years old stopped all the drug experiments crawled back to work.  1-2 Years later improved 25%, enough to function.  Still confusion with all sensations.  Brain was bombarded with this disease all the time.   Felt like some rare metabolite, vascular and autoimmune condition rolled up into one disease.      All senses shaky scattered, focusing a huge effort.   Numb brain function, little sensation entered my brain.    Some fluctuations but the condition always there.  

Still for 23 years I worked as a mechanical engineer.  Started a computer animation

company traveled hiked got married had two girls.   Fed up I just wanted to see the world as my family did.    Then told my problem to Neurologists and many other doctors.   All of them brushed me aside, or were stumped or pushes drugs on me.   All drugs magnified my problems exponentially!

2008 Things got real bad a repeat of 1985 but many times worse.   Many hospitals and drugs I really started thinking about ending it.  I was screaming on a daily basis.  A Nightmare!

Knowing I had a one of a kind condition I pushed Neurologists and other doctors to try and start some

tests.   Then some positive test results; Oligoclonal bands, Brain scans showing perfusion of the brain, cerebral angiogram indication of vasculitis, findings of small infarcts in the frontal lobe, indications of lupus and blood clotting.    However treatments we not helping.  

Went to MAYO Clinic twice.  Saw Dr. Orhun Kantarci Neurologist. 

Conclusion:  Horrible Sleep apnea!   Got a CPAP.  Zero help!  Frustrated I had major throat, tongue, uvula and nasal surgery.   Result: zero sleep apnea!   1 Year later feel I have only a short time to live.  Or I just want it to end.   It is something but what?

18

Hello James,

I am so sorry to hear about your experiences. Do you not feel better after the operation?

Have you looked maybe into thyroid hormone levels or bipolar disorder?

Take care!

19

Thanks but living with it you know something is organic.  I am just in  great need to squash it.    Thanks

20

Hi James, message me I have a few thoughts, ideas & questions x