NeuroTalk Support Groups - Advice/Help desperately sought

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- - Advice/Help desperately sought (https://www.neurotalk.org/traumatic-brain-injury-and-post-concussion-syndrome/102205-advice-help-desperately-sought.html)

Hi Guys

Thanks for the notes on seizures, makes interesting reading!

If i go by your descriptions then what I am going through sounds most like absence seizures. Waiting on doc appt next Monday to see what he has to say this time round - Ho Hum :)

Went to see Doc on Monday - he was useless as usual and I got the whole..

"Well you CT was normal and your bloods are just fine.... perhaps I should consider referring you to the neurologist if the symptoms persist...!"

Symptoms persist... I'll give him flaming symptoms (really wanted to swear there)! After I reminded him that these "symptoms" had been persisting for over six months he finally gave in and said he would refer me to the neurologist. FINALLY!!

On a good note, my private physio paid for by the other side has finally come through. Had an hour long chat with a nurse over the phone about how i was feeling and what treatment i had so far. She asked what doc had said about my blackouts... when I mentioned hypertension there was a long pause and then a grave "I see....". At least I'm not the only one who thinks he's useless. She mentioned PCS very quickly at which point i just wanted to hug her and give her a big slobbery kiss :eek: What is nice is that she knows i am off to see a neurologist as part of my lawsuit and wants to keep in touch to see how it all goes.

So... YAY... something is finally happening and somebody finally knows what they are talking about.

WOOHOO:cool:

An endocrinologist might help, too

Quote:

Originally Posted by Enigmatise_1981 (Post 562448)

Hi
I'm really hoping someone can help me here - A brief History:

I was involved in a serious car accident in November 2008 where, although I (fortunately) didn't break anything, I sustained knee injuries, whiplash and I also hit my head against the windscreen. I have had a variety of problems including persistent memory loss, loss of concentration, headaches/migraines etc but something that i have started to notice more recently is these blackouts i get. I can get them at any time and anywhere, including when I'm driving the car. I also have big mood swings and my personality has changed, often feeling frustrated and very very angry, and it takes me a long time to "bring myself back down".

The reason I am asking for help is that last sunday i had a particulalry bad episode. I was in the supermarket feeling fine, maybe a little tired, then out of nowhere I suddenly went very very hot, started to feel light headed and was constantly "losing my sight" (everything went black) The blackouts (if thats what they are) lasted for up to five seconds each and i really though i was going to pass out. I continued to feel like this until my mum got me a danish pastry which i wolfed down and I started to feel much better - however for the rest of the day I felt a little nauseous and absolutely exhausted. I am also really concerned that I am getting them while driving where i don't feel hot, but my vision just suddenyl goes momentarlity and without warning.

Also I forgot to say that when I had my episode in the supermarket I was seriously tingling all over. I remember i was stood in the refridgeration aisle and just wanted to feel the cold but it didnt make me feel any better

I have had very bad stabbing headaches (just behind my right eye (area where i hit my head)) on and off since the accident but they seem to have calmed down in the last couple of months. Though when i get them it is excruciating.

I have had CAT scans, blood work, urine tests (not pregnant) and all that kind of thing, though to be honest i haven't mentioned this to my doctor yet (but I don't have that much confidence in him to be honestbecause he always just refers me to someone else). It would be great if i had something to go to him with, maybe actually get him to help me.

Any help or advice anyone could give me would be really helpful

Thank you

Hi Enigmatise

Some of the things you describe, such as the headaches, feeling really hot, mood swings can be caused by damage to the pituitary gland. I had five major concussions before being hit by a car at age 15, and it took years for all this to accumulate. Now, at 57, I've found that my pituitary has gone mental and doesn't do any of its jobs well. To check this out, you need a referral to an endocrinologist, who will do a lot of blood tests. She will probably also do a scan of the pituitary. I don't know if this will address everything you are experiencing, but it's something to check out.

blessings

gershonb

Our injured friend Enigmatise

Enigmatise -

I worry that your General Doctor (not the Neurologist) is just dreadfully ignorant about this issue ... this pin-head thinks blackout, blindspots, and massive, debilitating migraines are due to "typical of hypertension??" Did this fool get their medical degree from a box of FRUIT LOOPS??? :eek: OMG! I had to catch my breath here, as I am nearly unglued with sorrow that a doctor told you such an incorrect diagnosis. My Lord!!!

I agree 100% with everyone on here ... SEE YOUR NEUROLOGIST ASAP!!

Believe me ... I was in the hospital for 6 months and in a Coma was 34 days due to my head injury. If you still have symptoms, get a ride to an Emergency Room in a hospital. They will admit you, I'd bet the farm on it, but either way, you'll and get you an official diagnosis. You NEED IMMEDIATE HELP ... please, for the sake of your health & life ... get what you need. This symptoms are nothing to joke or even downplay like calling it "hypertension."

Good luck & God Bless! :grouphug:

Quote:

Originally Posted by Enigmatise_1981 (Post 562831)

Well - Just got back from seeing my doctor.

Basically he sent me for more blood tests due to my headaches and constant fatigue and I have to go back and see him next week. If symptoms persist he will refer me to Nerologist. Prescribed me Zopliclone to help me sleep on the nights that i struggle.

Re the blackouts he had some funky word for them but said they are typical of hypertension...

... Guess i just have to wait and see

Enigma: I haven't been on this site for a while but just had to respond to your post. After my then 14 year old daughter suffered a series of concussions she started having what we also termed "episodes" where her energy would completely drain from her body to the point where she could hear all that was going on around her but was unable to respond even to groan or lift a finger. They would come on suddenly and without warning, although we figured out eventually that lack of sleep and long periods of loud noisen would predispose her. Eventually the episodes got less severe and frequent and after 2 1/2 years she is back to old self. What was critical in her recovery were the following:
(1) EFFEXOR -- Technically an antidepressant, but in small doses helps to re-establish nerve pathways in the brain; (2) ACUPUNCTURE; (3) OSTEOPATHY; and (4) HOMEOPATHY. She didn't do all of these concurrently; for example, when #2 didn't seem to help any more she moved on to a practitioner who combined #'s 3 and 4. I hope this helps. This condition can be so frustrating and it's easy to feel defeated, but please know that people do get better. Throughout the course of her recovery we never imagined that she'd be whole again, and there were points along the way where we felt, "OK, she's not the way she was, but she can live a normal life with some modifications." This may turn out to be the case with you and ANY improvement is worth celebrating. It sounds like you're on a good path. Good luck and good health to you.

Hi Everyone

Thanks for your messages.

I am seeing the Physiotherapist now and he's really good. He wont touch my neck until I have seen a neurologist which although is a little annoying, I am pleased he is being professional and sensible in my treatment. I am still waiting for the neurologist appointment to come through but hopefully will hear something in the next couple of weeks as all the relevant paperwork has now been filled out.

On my Physio's suggestion I am about to start 1-2-1 Pilates aswell to help straighten me out. Having to effectively learn how to walk again as my knees are pointing in all the wrong directions, but I am confident (as is my physio) that I should start seeing some improvement real soon. I am really pleased because he said as long as I do as I am told he sees no difficulty in my going skiing next year - YAY :D

On the blackout front I haven't ACTUALLY blacked out since my last bad episode which i mentioned on here.. I do get the "aura's though - it's like somebody is trying to pull me out of my head, always feels liked i am being pulled to the right - not a nice feeling and very weird and difficult to describe, but I am happy I haven't had a blackout. Does seem that i get it when i am tired or feeling under the weather though.

I am starting to really look forward to going away now, I honestly think that I will start to feel so much better once I have removed myself from my current situation. :)

[/QUOTE](1) EFFEXOR -- Technically an antidepressant, but in small doses helps to re-establish nerve pathways in the brain; (2) ACUPUNCTURE; (3) OSTEOPATHY; and (4) HOMEOPATHY. She didn't do all of these concurrently; for example, when #2 didn't seem to help any more she moved on to a practitioner who combined #'s 3 and 4. I hope this helps. This condition can be so frustrating and it's easy to feel defeated, but please know that people do get better. Throughout the course of her recovery we never imagined that she'd be whole again, and there were points along the way where we felt, "OK, she's not the way she was, but she can live a normal life with some modifications." This may turn out to be the case with you and ANY improvement is worth celebrating. It sounds like you're on a good path. Good luck and good health to you.[/QUOTE]

Hey there - I actually have free homeopathy at the moment - a lady i know well is using me as her case study. When we compare the note she took way back when, to the notes now there has been alot of improvement :)

Quote:

Originally Posted by Enigmatise_1981 (Post 562927)

I just hope the neurologist through my solicitor isn't such a numpty and will actually help me and maybe refer me for an MRI - I live in hope

Yes, get MRI to check for gross brain damage (aneurysm). If you've had major personality changes (irritability, anger, sadness) and bodily problems (muscular, GI, appetite, fatigue) that are causing significant functional, occupational, or social impairment see a psychiatrist for depression. Mood disorders are the most likely conditions from TBI, even a mild one. First line treatments are SSRI (prozac, zoloft, paxil, etc) and SNRI (effexor, pristiq, cymbalta). Second line treatments are MAOI (parnate, nardil, emsam). Go through all the medications until you find something that works. They do work. I've witnessed miracles. Good luck.

[QUOTE=Hey there - I actually have free homeopathy at the moment - a lady i know well is using me as her case study. When we compare the note she took way back when, to the notes now there has been alot of improvement :)[/QUOTE]

Great news!

Quote:

Originally Posted by blackcompe (Post 578133)

Im confused why my CT scan didn't show anything.. surely if that didn't show anything, then an MRI wouldn't either!!