So, I was checking into this and I came up with a very frightening possible cause for this...
What causes olfactory hallucinations (phantosmia)?
Many people are sensitive to certain smells, but in an olfactory hallucination (phantosmia), you detect smells that are not really present in your environment. It should be noted that this term needs to be differentiated from another disorder of sense of smell known as parosmia in which a smell is present in your environment but is distorted.
The smells detected in phantosmia vary from person to person, but may include foul odors such as rotting food or pleasant odors such as fresh flowers. Phantosmia may progress to olfactory delusions, a condition in which you persistently believe that the smell and its source exist, even though they do not.
Most often phantosmia is due to temporal lobe seizures, but it could also be caused by a brain injury. If you have a temporal lobe seizure, your phantosmia may be brief and you may lose consciousness or have other symptoms of epilepsy.
Now, because I have had Grand Mal seizures in the past, this temporal lobe seizure thing is pretty scary. I am on Tegretol 300mg/tid but they say that temporal seizures are diffucult to contorl with medication so I wonder if this is a possibility for me???
A temporal lobe seizure starts in the part of the brain that processes emotions. Many people who have these seizures experience odd feelings — ranging from euphoria to fear — at the onset of their seizures.
Because it's typically localized to one part of the brain, temporal lobe seizure is classified as a type of complex partial seizure.
The temporal lobes lie along the sides of your head, just above your ears. Seizures that begin in those lobes often stem from an anatomical defect or scar. But many temporal lobe seizures have an undetermined cause.
These types of seizures affect all age groups. People who have temporal lobe seizures usually remain conscious during a seizure, but they lose awareness of their surroundings and rarely remember what happened. Signs can include lip-smacking or picking at clothes.
Temporal lobe seizures are particularly resistant to anti-seizure medications. Surgery may be a good option for many people, especially if their seizures consistently begin in the same location within the temporal lobe. Many people become seizure-free when the affected portion of the lobe is removed.
I was just talking to my Mom on the phone and about 2 weeks ago I was at her place and while standing at the sink I apparently was complaining of a terrible smell (I don't remember this at all) and I picked up a sponge and said that this is the problem and threw it in the garbage. Mom said that when I went to the other room to watch tv, she took the sponge out of the garbage and had my hubby smell it as well and neither of them could smell anything bad or out of the ordinary...in fact, Mom had just taken this sponge out of the wrapper and hadn't used it yet! Now I am really scared!
I am not knowledgeable on olfactory hallucinations and seizures. I've never had either. But just in the meatime before others with more info can come in and reply, I just wanted to say that I've read others here who smell weird things that are not there, and it is just another part of their MS.
I can see why you are scared because of your seizure condition, and I hope you get more info about this. I just hope you don't get too worried. Whatever it is, I'm sure you will handle it. You're a very strong person.
Yes, this sounds scary, and check out the post about my seizures. But one thing to remember when you are freaking out. Exactly how badly is this affecting your life- is it radical enough to go for treatment that could leave you sick or depressed (some anti-seizure meds have a side-effect of depression after a few years) or yikes, that surgery sounds too radical.
so, take a deep breathe and think about. Sure, it stinks, but more than that, how badly is it affecting your quality of life? Is it something you can live with? Ok, if not, get on here and yell at me and tell me so. As I said so on my post, I dont think I'm at a "work-able" or good quality of living right now, it think each person has to decide for themselves (with a bit of good input from others for good measure).
You've done the research, you're scared, surely even evil neuro can order an eeg? Or if you think you are having seizures a trip to the hospital would not be out of order, and you will be assessed for brain activity. Just being scared is not helpful, you need to find out what is going on.
Just take a few breaths (I'm one to talk eh?) and look at this all objectively. How are your sinuses? Can you breathe okay through your nose? If not, decongestants will help. May be the cause of the problem, maybe not, just look at ALL the options.
Ask you hubby and or mum to keep an eye on you for the behaviour you describe. If you will not remember it they will if they know what to look for. If you go into one of these states get them to call for help then and there. If you are having a seizure and they call for an ambulance and catch you in the middle of it then they will have major information to work with.
This whole situation is made so difficult by your doctor problems. Myabe it is a case of getting your family to report for you if this happens. Your bringing it yourself as a symptom may backfire, they may think you are 'looking' for more problems to get the referrals you need. We all know that is not true. I hate the situation you are in. I wish you would just do as Sunny did and cross the boder to New York and get seen at NYU or somewhere. This cannot continue as it is.
Please get your family to keep an eye on you. I really think a worried call from them to the hospital will get your further than you reporting the symptoms, I am just furious for you that you may have to wait for a seizure before you get attended to. This is not right.
Decide. There is nothing to lose reporting this to your doctors. Who knows, they may even do right by you and get you properly assessed. We all here are so angry for you, and it is your problem, I can't even imaging what you are feeling.
My meeting to clear my name from the evil gp is in a few weeks, got the paperwork today. I am going to have to be very very clever in how I handle this. Dealing with beurocrats who don't give a dam. I'm not the praying type, but will pray my heart out before this confrontation. Religious or not, prayer focuses the mind and strengthens the spirit. Life is going to do the right thing by you, and me, it always does eventually.
Keep us informed
I knew that losing your sense of smell can be a symptom of MS but I wasn't aware that smelling things that are not there is...thanks for the input wonko and thanks for the kudos...just don't feel very strong at the moment...sort of feel like I have lost the fight and can't take much more of this...time will tell I guess.
Sunny...I have been on anti-seizure meds for 15 years now but as the data says these seizures are difficult to control with these meds...if in fact they are seizures, the meds probably wouldn't affect them anyway. I laughed at your line "Sure, it stinks" cause it really does and it makes me nauseous and takes my breath away and I sometimes feel like I am losing my mind. I think that I will wait to see what the neuro/psych consult says...I did tell them that I do smell things that others don't...whether or not she wrote it down or paid attention is another thing that I will have to wait and see. I can't live with seizures though...I can't drive or do much of anything that may involve others safety unless I know that these are not seizures so I feel pretty much stuck between a rock and a hard place. Not a good place to be don't you think?
Lots of HUgs,
Rena, ooo... that does stink, truly! Try not to live in fear of them though, be pro-active and do what you can, ok? I've done the same in my life, and so far enjoyed life to the fullest, (gulp) seizures and all, come what may! And having 15 of the jerky kind in one day gets old.... yesterday was long for me!
just a quick suggestion... if these are seizures, I would "suggest" a new neuro IF you were anyone else (yes, I remember your doc. situation) My dad is doing re-testing and is going to switch seizure meds this year. Every year they come out with new ones, and the leading research, etc. has proven that is good to go ahead and re-test, i.e. EEG, sleep studie EEG, MRI's, etc. and then choose the correct new medication that will better treat your seizures (my Dad's doc. said about 10 years or when needed) because there are a lot of better onese out there than even 10 years ago. Honestly, he started his meds 30 years ago, and has never changed, as do many folks out there. They find one that "works" and just stay on it, even if they do have a few seizures here and there. What they don't know is that they need to every so often continue to look, change and re-invent their seizure control strategy to maximize the best medicine and technology has to offer.
With you only having one seizure, it's odd that this would pop up know this many years later. Did you have a flare when this started that would indicate new brain damage that would have kicked it off?
Hope this goes away, or at least you can find answers... try to not worry about it and maybe carry something good smelling with you "just in case"?
I am so sorry that this is happening to you.
I pray for this symptom to go away and for you to get an medical explanation as quickly as possible.
Ya know what....this is something else that has been happening for a while. I will start to say something and know what I want to say but absolute jibberish results and spews from my mouth.
For example...I will think to say...I heard that Albert is going on a cruise.
What comes out is ashudneshunsheeeeesmshshsanso...or something very close to that...totally indistinguishable as speech! This has been happening for a while and I just realized that this is not really like the problems I have with slurring and stuttering and word retrieval. I know what I want to say and this is how it comes out!
This doesn't happen all the time mind you...I can't tell you when it is going to happen and I can't say that it is related to anything in particular. It just happens...perhaps when I am pre-occupied with the tv and suddenly want to say something it will come out like this and I have to rethink what I am wanted to say and then I usually still struggle to get it out but that is when hubby starts his "mind-reading" phenomenon and can usually finish what I start to say and can't finish.
Does this happen to anyone else??? Does anyone understand what I am trying to explain? Does anyone know what the heck this might be or could it be related to the MS? Please help me...I feel like I am drowning here all of a sudden and it is darn scary! I know if I go to my gp she will say what she always has "Dr. evil-neuro has stated that your MS is in-active so I don't know what it is" and without having an "attack" of anything how can I justify going to er??? Am I losing it here??
I remember that Quix listed strange odors as a type of parasthesia; she even made a comment about how it always seems to be unpleasant; why can't it be cinnamon or something nice. I think its in the Health Pages under Parasthesias.
It can just be sensory (smell) nerves sending faulty signals.
I also can understand why you would be worried with the past seizures and the bad doctors, but lets hope its just one more sign that your "inactive" MS is messing with you. You could add it to the list, like some of us have "Did I lock the door? Did I turn off the stove, or iron?" Have someone with a decent sense of smell check out your foul smells before you throw something away.
I have always had an extrememly keen sense of smell; can tell if someone has gum disease from 5 meters away; perfumes about knock me out, etc. I've been known to carry Kleenex to breathe through to cut the odors.
Lately, I've been having friends ask me "Don't you smell that?" and I've had to say no; kind of scary in a different way. Change is frightening with this disease, in or out of limboland, because you don't know the cause and don't know where its leading.
My dear Rena, you've had enough heaped on your plate; lets just decide that this is a purely sensory change until someone else points to some other option. I'm hoping the results of your neuro-psych consult can shed some light on this, and calm some of your fears.
Aha, I found the pertinent paragraph from the parasthesias page! ha ha ha!
"The special senses of sight, smell, hearing and taste may also be affected in MS and cause paresthesias. In Optic Neuritis, a person may see flashing lights, halos, wavy lines, things that appear to scurry round in the peripheal vision. These are paresthesias. If the visual signal is reduced there my be shadows, visual field defects, or diminished color saturation (intensity). The sense of smell may disappear. Or we may have paresthesias of smells that are not there. For some reason these smells are always odd and usually very unpleasant. (why can't we smell cinnamon or lilacs?). Loss of hearing is also not uncommon in MS. Paresthesias of hearing and taste occur, but are less common. "
Love and Hugs,
I thank you for the digging you did on this paresthesia and the time you took out of your day to do so Kathy. I am still concerned though because the smells that I deal with are not always unpleasant...i.e. cooking apples, chinese food while other are...i.e. ammonia, dry dog food, wet used SOS pads (really weird), so I just don't know about all of this.
I did have Aura's when I had the seizures back in 1993. They were really weird as well with strange smells and also the sound of a huge crowd of people all talking at the same time in my head! I remember telling Mom about it when I was in high school and she said "oh, don't be so foolish"!! I can imagine at that time she probably thought I was headed for the loonie bin...how was she to know what it was...and again, it usually happened the most while I was in the shower! Ok, I am getting weirder all the time and I recognize this but don't be scared please...I don't think it's catchy! I do know that hubby and I are going to have a long talk tonight about this stuff and I will have him watch me much more closely so that we can keep tract of what is going on.
You are NOT getting weirder; weird things are happening to you.
No one here will judge you for strange happenings or fears because of them. Let go of your Mom's misunderstanding of what you were going through, and realize that we will help you ride out whatever you are going through.
Have you experienced any seizures since back then? If not, then perhaps the Tegretol is working and your seizures were not in any way related to temperal lobe seizures. I am inclined to think that you are experiencing parasthesias and that is combining with normal MS cog fog (or brain f a r t s) and scaring the heck out of you.
I think that your hubby will be glad to help you keep an eye on yourself. You are very smart to pay attention to what's going on with you and realize that driving isn't a good idea until you figure this out.
When my dizziness was pretty bad, I avoided driving as much as possible. One day I had to go to a doctor's appointment, no one was available to drive me, so I drove myself, since it was only a 15 minute drive each way.
On the way back, going around a sharp curve on the inside of a three lane (on each side) freeway, it felt like the world turned upside down and then right side up. I was stuck in the inside lane in tons of traffic and felt like I was going to barf and couldn't focus my eyes properly. I prayed, breathed deeply, bit my lips, sang out loud, did everything I could to make it safely home.
Now I only fill up my small car's tank once a month, and don't drive if my vertigo is acting up. I could have learned the really hard way; thank heavens I made it home safely!
BTW, haven't I told you that the city where I live has an unofficial slogan, on many bumper stickers; Keep Portland Weird! Weird isn't bad, it's interesting.
I had times with incomprehensiblle languuage.
temporal lobes are direct involve in language.
a pperiod of time ii could noto speek contractions. And always ending sentence withh 'IT". Besides the speeh part, it was language.
I very much understand your saying you know what to say and it comes out jibberish (which i found sometime ago discribed medically, if i fidn it can send)
i am sorry youuu are having a bd day...hang tough rena, amo
ok...that the word 'jargon' i am thinking.
Thank you so much for your compassion Kathy...I feel so out of sorts today and yesterday was not better but I knocked it up to fatigue from the last two weeks of busy, busy, busy but I haven't improved any since yesterday.
I haven't had a seizure that I know of since about 1994 and even then the head of the MS Clinic was skeptical as to whether I was really having seizures or not and he felt at that time that if I was indeed having seizure that they could be caused by Rasmussen's chronic encephalitis. However, after having a positive LP, he felt that if I were in fact having seizure that they were related to the diagnosis of MS.
I can feel for you having such a scare while driving! While my license was never revoked, I agreed to not drive for a year and I didn't because I likened it to impaired driving...what right did I have to take a chance of hurting some unsuspecting person? None...so I don't think I will be driving again until I start to feel better at least!
I LOVE the bumper sticker and it should be applied to Edmonton I am sure...with my name on the bumper sticker I am sure by the way I am feeling today.
I just walked next door to give my neighbor a get well gift...we all know that she probably won't get well...she has terminal uterine cancer and is not doing well at all. I gave the the book "Chicken Soup for the Dog Lover's Soul" and I hope that if she can't read it that someone in the family will. I know that it helped me when I was sooo sick last July and it's short stories were perfect cause you don't have to try to remember where you left off. I hope she gets at least a few smiles out of it as I did. She was sleeping when I went over but I let her family know that although I can't do much care giving, if they need to go out to let me know and at least I could go sit with her. I guess we do what we can don't we?
Thanks for your kindness Kathy...it sure comes in handy for me on a regular basis! hehe
Lots of Hugs,
Thank you for your understanding honey...ya know, I have had a problem with my speech since last July and I have had one MRI done by the last bonehead neuro and there was no mention of the temporal lobe at that time. There has been no mention of it with the gp. There was no mention of it from the evil neuro.
Perhaps there will be mention of it by the neuro/psychologist???
I get caught alot on D's and M's but I am going to have to have hubby pay more attention to what the other deficits are (such as ending everything with "it").
So what did they find was the cause of your language problems amo? Is it related to the MS or is it something else? Has it gotten better and if so did you have to have speech therapy? I don't have this problem all the time as I have said before...mainly when I am fatigued or under stress or caught off guard...hmmm...I guess it's anybody's guess isn't it??? Any ideas honey???
Lots of Hugs,
Rena, no suggestions, only to add that I too have trouble with speech... I used to just have trouble slurring my words, but in the past month, i have a lot more trouble with either having times in the day where nothing will come out and all i can say is 'aaaaa' or simply talking gibberish with none of the words sounds like words. So far, i and my family just laugh it off, but it can get really bad when I'm very tired, I can barely communicate.
we need speechgeek:)
not to be connfused withh speech, the language comes in a couple areas. I think it is 'werniek (sp))area? I could have them very backwards.
goole 'jargon aphsia'
yes ii have improved very much.
I did have extennnsive speech terapy few years back. Lee Silverman Technique. While it focus on speecha nd swallowing, not language.
I thought i was going crazy till I searched myself learning . My doctors never said i has aphsia of any sort,, whichh thinking allways funny they did not. It was extremely obviously.
I know self dx's can be dangeous, but sometimes that's all we get, right???
keep faith!, amo
I'm sorry this is making you afraid and you have already been through so much. Try not to let yourself get too upset before you see a dr about this. I know your experience with drs, especially your evil GP, haven't been great, but I think you need to have this checked out.
I am not dx, but I am always smelling things, good & bad, that the rest of the family doesn't smell. I can remember this discussion on here before and yes, Quix mentioned it having something to do with MS.
I understand your concern about the seizures and also understand about the research you found about this. I just don't want you to upset yourself before you find out for sure. I'm a good one to talk, huh, been losing my feeble mind over this mess with Beth. I just worry about you and all this stress you are already dealing with.
I'm here for you and hope that this is just part of the MS, like the little mouses we all see from time to time. I'll be praying for you, sweetheart, take care of yourself.
Love & Hugs
Hon, I understand why you are feeling afraid. When something new comes up it is always quite unsettling but I do agree with doni that you should see a doc about this. Maybe just go to the ER if you don't want to deal with the twits that you have been.
You will only just work yourself up and cause yourself more anxiety letting this ride without getting it checked out.
I'm just so sorry this is going on with you. You know my thoughts are always with you.
Hey all...ya know...it's really interesting that most of us here want to apply any of the symptoms I have to "the MS". I find this interesting because if all of these symptoms are related to "the MS" why doesn't any of the doctors see this.
I mean there have been a lot of strange symptoms including this smelling things that are not there and this strange sound that comes out of my mouth when I know in my mind what I want to say but it comes out as garbled junk.
I have calmed down somewhat from yesterday and reasoned that these smells could very well be related to the MS...so what good would it do to go to the ER...probably they would do nothing and tell me to see my g.p. or my neurologist. Ya know, even the girls at the lung clinic asked who my neurologist is and when I told them they said "Wow...I have heard that she is really good...I wonder what the problem is?".
I don't think that I have jargon aphasia although it sounds a lot like what happens to me only it doesn't happen all the time. Hubby and I went and got a few groceries after he got home from work last night and this strange "language" came out a lot! I think it is because when you are grocery shopping you have a lot of different ideas going through your head and when I go to speak I am not concentrating on speaking and this junk comes out...for example I planned to say to hubby that we should get some more milk and it came out wouldjimanan...I thought about it for a minute and then tried again and was able to say what I had planned to say in the first place. Weird eh? I don't know, maybe Quix can shed some light on it and in the meantime I am going to wait until I see the neuro/psych results before I go back to the gp.
I sure appreciate all the support that I got yesterday and I hope today is a good one for all including me! hehe I am going to try to help out a bit in the back yard this afternoon and get some fresh air and it's supposed to be really nice for the next week. I will try to get some walking in as well...with hubby supervising of course but I really am going to be careful about my driving. Hubby agreed to keep an extra close eye on things for a while and he is going to be going to the neuropsych results appointment with me so I am hoping she will let him explain what has been happening.
Lots of Hugs,
I am glad you feel better today, sweetie. I still think you should talk to a professional about it, though. All of us here want what's best for you.
My speech thing isn't as bad as yours. When I'm having that problem I just can't talk at all, brain doesn't meet the tongue to produce the words.
I can identify and agree on the grocery store. I have had a couple of episodes of going totally blank while grocery shopping. Know I'm in the grocery, but seems I can't articulate where or how to proceed with what I was doing.......scary stuff......been trying not to go by myself or when I do I let hubby know, in case he has to rescue me.....ha...ha....ha.....
I noticed Quixy our mamma bear on here, maybe she will pipe in on this discussion!!
Sending you bunches of hugs and prayers!!
I can appreciate what you are saying about seeing a professional about this but there doesn't seem to be any in a 50 mile radius of my brain! hehe
It's not that I go blank when shopping...what I want to say is there...it just comes out as complete jibberish that no one could understand. I did have some trouble back in early spring where I would forget where I was and that sort of thing but that has rectified itself and now it's just this inability to speak English...my mother tongue! hehe
I really do appreciate the caring you have shown me doni! It really does help to keep me out of that big black depression hole that is sitting next to me all the time daring me to jump in...I think I was in it up to my waist yesterday but managed to pull myself out somehow and feel quite a bit better so far today!.
Lots of Hugs,
I am glad I could help, all of you are always helping me, and stood by me the last couple of weeks with the scare we're going through with Beth.
Knowing you are keeping us in your prays has helped keep me from that dark place. That's what friends are for..comfort, strength, support, someone to listen to our fears...etc., etc., etc.
I'm always here, dear friend, never hesitate when you need me!!