Author Topic: brain fog  (Read 1176 times)

gii

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brain fog
« on: February 11, 2018, 07:56:43 AM »
Hi, is severe brain fog normal with Sjogren's syndrome? i feel sometime as if i was completely drunk, unable to think etc. plus sometimes my face feels like its hot or burning.
I am only on plaquenil, iv'e seen about three doctors before it became so severe and all three were reluctant to prescribe steriods or anything else. Is there anything i could do? thanks

p.s i am young so it's not an age issue
p.s2 also i have little black dots in my sight sometimes, is it due to eye dryness or is is a neurological symptom?

Joe S.

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Re: brain fog
« Reply #1 on: February 11, 2018, 01:17:41 PM »
You may be having a reaction to plaquenil. Search web for side effects. If you are taking any supplements check for counter indications and drug interactions also.

The first dose for me left me blind until I got it out of my system.
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vrystaat

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Re: brain fog
« Reply #2 on: February 13, 2018, 05:18:44 PM »
I also have severe brain fog. It impacts my life badly.
I take these drugs:
1) Provigil: this drug is very expensive in the USA (what else is new?). The FDA changed it from a Class 2 to a Class 3 drug. Now it's tightly controlled.
    It was sold in Canada at 70% off, but now it's unavailable, because of its reclassification in the USA. Ridiculous. You could try to get it in India or Mexico.
    Truly, it changes your life.
2) Try Adderall (amphetamine and dextroamphetamine). It is a Class 3 drug, but not expensive (about $30 per month). Wakes you up, & gives you your old life back. A new 
    prescription every month is needed (as per our all-knowing, all-controlling government).

Good luck.
Sjogrens;Polymyositis;Polyneuropathy;Gastritis;GERD, Autonomic Neuropathy, Neurological complications, Trigeminal Neuralgia,Gamma 3 globulin low;Multiple infections;Brain fog; Ocular problems - blepharitis, scleritiis, dry eye,severe eye pain. Possible Inclusion body Myositis.Currently Endstage

WhatYouSjo

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Re: brain fog
« Reply #3 on: February 21, 2018, 07:07:21 AM »
Brain fog is the symptom I fear most. It was worst around the time of my diagnosis; since I began my treatment regimen, it has lessened considerably. it generally just pops up when I'm unable to think of a word that I should know. Still annoying, but better than feeling totally out of it.

Do the little black dots move when you turn your eyes? If so, they are probably just floaters, which are somewhat common. I've had floaters for many years preceding my diagnosis; I'm not sure if they are related to SS or not. If they are in a fixed position when you move your eyes, you should bring them up to an optometrist/ophthalmologist.
Seronegative male diagnosed 2014. Using generic Plaquenil, Restasis, Xiidra, low-carb diet, moderate exercise, select supplements, helminthic therapy, & LDN. My treatment regimen

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Carolina

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Re: brain fog
« Reply #4 on: February 21, 2018, 12:58:42 PM »
Dear gil,

The black dots may be 'floaters', irregularities in the fluid inside the eye, which appear as dots or sometimes clouds.

When I first noted them, I was shocked and surprised.  An ophthalmologist  checked my eyes and assured me that 'floaters' are a natural part of the aging of the eye, and eventually I would seldom notice them.  That has proven true.  They began appearing over 30 years ago.

If you have a diagnosis of Sjogren's, you may have some neurological issues in other parts of your body, that will produce 'brain fog'.  You can read about this on the parent website that hosts our forum.

Keep track of your symptoms.

A hot or burning sensation in your face can also be part of a neurological issue, or a side effect of a medication.

We are all so different, and add that to the neurological issues associated with Immune Disorders, and the fact that we are often taking medications that can cause side effects, and we wind up with a 'perfect storm' that can confuse everyone.

If brain fog is also causing you anxiety, practicing meditation may help you stay centered and relaxed.

Keep us posted!

Regards,  Elaine

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Sharon

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Re: brain fog
« Reply #5 on: February 21, 2018, 02:42:17 PM »
I had severe brain fog until I went on the AIP diet.
Whenever I "cheat" even a bit on it the brain fog and fatigue come back the very same day.
Sjogren's (+ RA?) positive ANA, RNP, RNP-A, APCA salivary gland swelling, dry mouth & eyes,, eyelid swelling & redness, photosensitivity, fatigue, severe joint pain, multiple sensitivities and allergic reactions 
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gii

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Re: brain fog
« Reply #6 on: February 22, 2018, 01:23:02 AM »
Sharon, you would say the AIP actually works? Is it worth it?

Sweetcheex76

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Re: brain fog
« Reply #7 on: February 24, 2018, 11:23:09 AM »
Yes! The brain fog is awful. But, was diagnosed with ADHD years ago so I take Vyvanse every morning. Without it, the brain fog is thick and depressing. I had a spinal procedure this week and I couldn't take my Vyvanse for a few days. It was terrible. I just laid on the couch and couldn't function. See if your doctor will prescribe you a low dose. Adderall will probably help as well. There's something else called Prevagil (sp?) that's is supposed to be good but getting insurance to pay for it if it's not being used for narcolepsy is often difficult. Good luck!
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Jasper

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Re: brain fog
« Reply #8 on: March 03, 2018, 08:23:42 AM »
The brain fog (cognitive dysfunction) is caused by the constant inflammation that Sjogren's causes.

I had terrible brain fog and had great difficulty thinking, functioning, problem solving, carrying on conversations, everything.

Now I am on Rituximab, which depletes B cells and decreases the inflammation. Since being on Rituximab I have no brain fog.

To get rid of the brain fog, you need to get rid of the inflammation.

Try to find a doctor who will treat Sjogren's aggressively so that the constant systemic inflammation is decreased.

As far as your eyes are concerned, if it was me, I would see an opthamologist who is familiar with Sjogren's and have him/her examine my eyes.

Your burning face may be small fiber neuropathy. Try to get an appointment with a neurologist who is familiar with Sjogren's neuropathy and small fiber neuropathy. Ypu will probably have to seek one at a large university affiliated medical center. Many neurologists know nothing about Sjogren';s or small fiber neuropathy.
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susanep

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Re: brain fog
« Reply #9 on: March 04, 2018, 01:15:45 AM »
I also have had my face feel so hot like I felt sunburned, but when I took my temperature it was normal. I don't know what causes that, but yes, I have lots of brain fog.

Jasper, what is it you mostly do that lessens the inflammation? Is it the Rituximab? You may have told me once, but with the brain fog, I can't remember. I will soon be seeing my Rhuematologist.

susanep :)
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Jasper

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Re: brain fog
« Reply #10 on: March 04, 2018, 09:28:07 AM »
Susanep ..... Yes, the Rituximab is what has interrupted the inflammatory cycle and thus reduced the inflammation.
ANA 1:160; SS-A+; MSG +; Plaquenil, Rituxan infusions, Restasis, HRT, Curcumin, Calcium, CoQ10, NAC, Resveratrol, Whole Omega, Omega 3, R Lipoic Acid, Acetyl L Carnitine, Krill Oil, Mag. Threonate, Bio-Collagen UC II, NAD+, & Vit A, B, C, D, E, K 1 & 2.

gii

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Re: brain fog
« Reply #11 on: March 12, 2018, 01:02:25 AM »
What can you do if your doctor is reluctant to prescribe Rituximab? is it possible to get it privately somehow? im sure it could help

WhatYouSjo

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Re: brain fog
« Reply #12 on: March 12, 2018, 08:35:47 AM »
What can you do if your doctor is reluctant to prescribe Rituximab? is it possible to get it privately somehow? im sure it could help

Rituxan is a serious medication that is typically administered in a medical facility. Doctors are often hesitant to prescribe it due to the serious and occasionally fatal side effects. Unfortunately, doctors often favor quantity of life over quality when making these decisions, and you are going to have a very difficult time getting access without a doctor's support. I would advise you to get a consult with a different doctor.

In the meantime, you may want to explore alternative treatments that do not require a prescription.
Seronegative male diagnosed 2014. Using generic Plaquenil, Restasis, Xiidra, low-carb diet, moderate exercise, select supplements, helminthic therapy, & LDN. My treatment regimen

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vrystaat

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Re: brain fog
« Reply #13 on: March 12, 2018, 11:16:17 AM »
I think it would be valuable to hear the symptoms of your brain fog. Sometimes I cannot tell if it's a flare up of Sjögrens Syndrome or brain fog.

Brain Fog
-----------
.  Very forgetful. I can't remember a train of thought
.  I get lost in the middle of a conversation
.  I cannot remember names, addresses or phone numbers
.  I have to post reminder messages all over the house
.  I post a letter without a stamp
.  I go to the wrong doctor's office
.  I have to keep a very detailed to do list
.  Medicines: I have to closely monitor these, otherwise I forget. I use three daily pill dispensers.
. I cannot remember a grocery list

My usual symptoms of a flare-up:
-------------------------------------
. Eyes become very dry and painful
. Headache (sometimes severe)
. Joint and muscle pain
. Submandibular gland pain and swelling
. Worsening of fatigue
. I have polymyositis, so I become weak, stumble and I'm unsteady on my feet.
. I feel feverish, and sometimes I am (usually about 99.1 degrees)

This often progresses to a full-blown recurrence.

I hope this is interesting.
« Last Edit: March 12, 2018, 11:22:39 AM by vrystaat »
Sjogrens;Polymyositis;Polyneuropathy;Gastritis;GERD, Autonomic Neuropathy, Neurological complications, Trigeminal Neuralgia,Gamma 3 globulin low;Multiple infections;Brain fog; Ocular problems - blepharitis, scleritiis, dry eye,severe eye pain. Possible Inclusion body Myositis.Currently Endstage

Carolina

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Re: brain fog
« Reply #14 on: March 12, 2018, 10:53:07 PM »
Oh dearest vrystaat,

I truly 'get it'.  I have many of your conditions, but not polymyositis.   

My overriding diagnosis is Primary Immune deficiency, so I have IVIG every four weeks and that gives me protection against most infections.

Unfortunately my disordered Immune System attacks my organs/systems, so I have multiple types of neuropathy, the most damaging one is PN, which renders me disabled.

I spend a great deal time making lists and tracking important dates and events in my life, as a way of managing 'brain fog'.  Once I heard of this idea:  If the weatherman says 'rain tomorrow' on the nightly news, put your umbrella on the front door handle RIGHT AWAY.   

So, when I think of something that must be done, I take action to put a visible clue to remind me.

Of course, I have to 'see the clue and remember what it is reminding me of!  The empty box on the counter, the pill bottle in my purse (when visiting a doctor), there is a chair near the front door where I put things that have to 'go  out', all ways to overcome brain fog.   All our bills are paid on line, and those who don't have email only hear from me at Christmas, so I use few stamps. 

As I re-read your post, I realized that I really haven't had a 'flare' in a long long time!  I hate to even
'say' that out loud.   I take 2 mg Medrol (methylprednisolone) every other day, take 3600 mg gabapentin daily, and I wonder if that combined with the IVIG every four weeks has tamed my Immune System a bit?

I keep developing new 'conditions' related to increased neuropathy (now my gastro-intestinal system), so my immune system still 'rampages' (which is what a 'flare' is).   But I haven't had that awful fatigue/pain/depression paralysis which immobilizes me  for some time.

Interesting.  I wonder  when this change occurred?  I'll  have to go back over my daily diary to see when my last flare was.

To be continued.

Regards,  Elaine
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