Severe brain fog or TIA / mini stroke??

[Sallyagerharris]

I had a mini stroke in July and a suspected TIA about 5 weeks ago.

It sounds mad not being sure but may have had another TIA yesterday or was it nightmare extreme brain fog.

Over aboit 2 hours I became extremely confused, slurring speech to extreme if I tried to speak, missing words couldn’t think at all, very dizzy, distressed for obvious reasons, brain felt unable to process or think at all, light headed ... after about 2 hours it over the afternoon eased as I rested.

Since the minor stroke in July and subsequent TIA my sight has worsened considerably and more severe memory lapses. I’ve been diagnosed with severe blood vessel disease in the brain but still awaiting a ME neurologist consultation and my post stroke Pyschologist is trying to get me a TIA consultation. FYI my post stroke Pyschologist told me ambulance people can refer people to TIA department in hospital or onto stroke dept.

Front top part of brain hurting / similar to brain inflammation feeling.

It was quite horrendous and extremely frightening. I was with my bestie pal. As I didn’t have facial droop, although the lhs of my face felt heavy, from my friend watching me and looking after me. If I’d been with my Mum she would have called 999 or if it had happened with strangers etc then it would have been 999. For obvious reasons with the pandemic I want to avoid hospital.

Thx for all advice.

Sally x

 

[wabi-sabi]

For a possible TIA I think I would risk the hospital.

 

[Nat kea]

I had a similar condition, bloating in the frontal region, almost complete loss of memory, terrible fog, I could not think, loss of coordination. I had MRI and vascular ultrasound. Hydrocephalus and cerebrovascular accident. I was prescribed Vasobral. After that, almost immediately everything improved. Almost two years did not happen again, but it was scary.

 

[Sallyagerharris]

I think what I’m partly trying to find out is whether others have had similar symptoms but ME based ... I think it’s the potential overlap in symptoms which throws me ... still very emotional which is natural and taking it very easy!

I appreciate the feedback.

Sally x

 

[wabi-sabi]

ME symptoms are always tricky to figure out, I think!

It's always easy to think that all of our symptoms are caused by ME. But if you have something going on that might not be ME-you mentioned having a mini-stroke and TIA- AND might be something fixable and potentially serious-it seems better to me to err on the side of caution and get it fixed if you can. At the very least verify what it is. Docs may not understand an episode of PEM, but they should be able to identify a min-stroke. Then you know and can get appropriate care.

 

[Mohawk1995]

ME symptoms are always tricky to figure out, I think!

That is the truth indeed! It would seem best to always treat stroke like symptoms as a stroke. If, however the doctors cannot readily identify a stroke or other significant neurological findings then it would seem that considering ME or other a chronic disease process might be good. TIAs are difficult because the diagnosis usually means no significant findings on CT, MRI or Angiogram (a stroke will). Also things like Ocular Migraines can mimic stroke.

Is it a TIA? An ME related issue? Ocular Migraine? Other Neurological related issue that can present without CT, MRI or Angiogram findings? Only a Neurologist that specializes in these and other chronic issues would be able to tell. And even a great one, could be uncertain if the person has ME. I would say if a person has ME, my thinking would say that ME needs to be factored into every decision. Best to you on your search for answers!

 

[Sallyagerharris]

I am waiting to see an ME neurologist via my London ME consultant but the appointment isn’t until February. Sadly recently postponed as it was supposed to be last week. I am also waiting for an appointment with a local ME neurologist as well. Trying to cover all options. My neuro Pyschologist is trying to get me onto the TIA clinic appointment list and did say if I call am ambulance and they deem it to be TIA rather than a stroke then they can refer me to the hospital TIA clinic. She said it’s an easier way to get in the clinic rather than a GP referral!!

I’ll just be glad when I can speak to a specialist. Just all scary having had a small stroke in July and then a TIA 5 weeks ago ... what fun!

 

[lenora]

I think what I’m partly trying to find out is whether others have had similar symptoms but ME based ... I think it’s the potential overlap in symptoms which throws me ... still very emotional which is natural and taking it very easy!

I appreciate the feedback.

Sally x

Sallyagerharris, Good day! I wanted to inform you of a condition known as Autoimmune Encelphalitiss...not a great deal is known about it, but it has been a diagnosis that I also have. (Collecting a no. of them these days!_

In January I was hospitalized and was unconcscious for two days. Prior to that I had been tripping a lot, my l. eye was fuzzy and something didn't seem right, then it started going to my r. eye. At the same time, apparently my husband was asking me questions and even though I thought I'd answered them, I had hadn't.

During the same period I suddenly lost my l. leg (walking couldn't be done). Suddenly I could talk at all...and it was at that point that my husband called 911. The men took it seriously, but I was able to do all the things that stroke victims can't.....so they were puzzled. I was taken to the hospital and during the ride was put in a cage like Oxyge mask (I hadn't seen one like it before) and remained unconscious for the two days I spent in the ICU. My husband wasn't allowed in the hospital. After numerous tests, etc., I was then diagnosed with Autoimmune Encephalitis. Since I had fallen a number of times for absolutely no reason, it seems, I had been on Keppra for seizures.

It seems that it was all tied in and it depends upon which part of the brain is affected. I was fortunate, it didn't result in psychiatric problems (see the book, 'Brain on Fire'...don't bother with the movie, it's ridiculous...the book isn't a hard read at all), as it did with this young woman. It also seems that it had to do with a lack of sodium in my diet, and drinking too many fluids...herbal teas, water, etc.

Personally, I don't think that's the end of the story. Part of it, yes, but not the entire matter. I would check this out yourself, and then ask the doctors for their opinions. I was readmitted in April, the same diagnosis and a few others....that have nothing to do with ME. So if you have any doubts, do bring it up with your doctors. You may need a spinal tap to rule out infection and will probably be put on steroids (I was both times). It's important to rule out infection and I underwent two taps, one while I was unconscious and one when I was hospitalized in April. The worst of it was having to get myself scooted over from a stretcher to a slightly high table. My knees bothered me a lot as I also had to lay on my stomach. The site itself is anesthesized...and improve the test is over very fast. I also had a lumbar puncture, which revealed nothing. I had to stay perfectly still for a no. of hours afterwards, but I did end up with the headache from hell the following evening. I'm still trying to figure that one out! OK....I don't know if this will help, but....Yours, Penny

 

[xebex]

If you have been diagnosed with TIA and stroke I’d suggest a hospital visit. However that’s not to say not to consider it is something else. I think I told you before about my mum she had 4 “strokes” they were so severe and scary that she was rushed to ER each time and each time doctors were convinced it was a stroke and thrombolised her each time. Finally they and us all realized that the patterns and the lack of damage she had afterwards meant it couldn’t be a stroke and was diagnosed severe hemiplegic migraine, she found her thyroid medication was part of the problem and also started therapy for hyperventilation syndrome which has helped.

 

[lenora]

Yes, you absolutely should go to the hospital if you've been diagnosed with TIA's and/or a stroke. The fastest route to being seen is by calling 911. Paramedics who load you into an ambulance will decide whether or not you should go to Emergency. From Emergency, you're given a ?? (my brain) and will be given a bed when one becomes available. Doctors will see you in Emergency. All people who suspect they have the coronavirus should do the same if you're having compelling symptoms. It varies from person to person. You're taken in immediately if you have respiratory problems. Have your list of drugs, insurance info, contact info and other diagnoses prepared, names of doctors you want the info sent to, with their phone nos., and keep it in a safe place. Be sure to tell others where this paper is kept. Make multiple copies....it will save a lot of aggravation during the intake process.

If you go and sit in the emergency room (say another person takes you), you may be sitting there for hrs. I'm not saying abuse the system, but if you're having trouble breathing (the virus) or have already had a TIA or stroke, then time is important....go immediately.

My brain has been affected by having seizures and being unconscious for two days. My short term memory seems to be very slowly returning, and my long term is just fine. It has taken 8 hospitalizations, for at least a week each, for significant problems to be diagnosed. I'll still have to undergo at least 1 more hospitalization, possibly more. before everything is settled. And no, I don't like being hospitalized, especially if you can't have visitors because of the coronavirus. Stay well and be safe. Yours, Lenora.

 

[Sallyagerharris]

Huge thank yous. The good news is that I’m being referred to another neurologist ... non-ME for just understanding what my MRI showed and to look at strokes v TIA v other types brain dysfunctions ... it might take a while but I’m resolved in the meantime to scale back a bit on what I’ve been doing but as normal with all of us, life kicks in and sometimes we have no control on things that impact us.

I will call 999 if there is a next time. I’ll update when I get progress ... what fun life is!!

X

 

[kangaSue]

Front top part of brain hurting / similar to brain inflammation feeling.

Both my husband and a close friend have had TIA's and both said they had a feeling of tightness in the front upper part of the head for many months afterwards, both saying it felt like they were wearing a hat all the time that was too small for them at the front of it.

 

[lenora]

Hello @ Sallyagerharrisl.....I'm glad that you're getting a referral to see another neurologist. I don't believe you've been through this before, have you? If so, just ignore what I have to say.

May I suggest that you make a thorough list of questions that you want to ask the doctor. Most prefer this approach and, another suggestion is to take someone along, as they're brain won't stop thinking at a certain point as the doctor describes what is happening to you. Find out what type of machine was used. Some of the MRI machines are older models...you can find out the answer when you return home. There will also be a radiology report accompanying the MRI. Read it over yourself and ask the doctor to please look at the disc himself. You want as much of his input as possible. I would call ahead and arrange for you to receive a copy of the disc and the report, both for your home file. I saw my neurologist just earlier this week, and he said that things in the hospitals are just stagnating because everyone's dealing with the Coronavirus. As you know, a lot of neurological symptoms are coming out of that situation, too.

If the neurologist doesn't have any input, then please ask him for an early referral to some who specializes in your problem. It's possible that you may have 2 or 3 conditions going on...it happened to me and it happens to others all the time. You're a very polite person so you shouldn't have any problems. Dont' leave without answers to your questions, and have your family member or friend write the answers down.

Take good care of yourself before you see the doctor. Oh, because this is in addition to all my other problems do ask how your arteries seem?...especially your carotid arteries. Ask if there's any blockage.? If he doesn't know then ask for a test to determine this matter. I'm sure he'll be as helpful as possible, but it would be good for both of you if have did have a list.

Take good care of yourself, Sally. Forget about making meals (buy them and eat at home...or have them delivered), and cleaning up around the house. Or have someone make something simple like scrambled eggs, fish, etc. The washing can wait, I promise you, it will be there when you return home. It's imperative that you ask him how much you should be doing, is it affecting your blood pressure readings? What about salt? I was told to cut my salt usage out...which I did. As fortune would have it, I developed seizures because of a severe lack of salt in my diet and drinking too much fluid...this at the internist's insistence. No one knows the rest of the answers, so I've become accustomed to always waiting for something. My surgeries were long ago, and would be considered pioneering ones today. All in all, I'm extremely fortunate, and I know it.

It's very trying to sit around waiting for a diagnosis, isn't it? I'm glad you're in a city. Yours, Lenora. xoxo