[ladyjae]

Hello all so as I attempt to adjust to life with N with C and all my other tag along issues Fibro, Myofacial pain syndrome, sciatica, bursitis, and who knows what the doc will throw in next. I have managed to figure out what causes what for the most part, not all but most. I do have a few making me nuts trying to decide so I can figure out what direction to go. so I thought I would come here, see if anyone can help. My biggest issue at the moment is I have a cycle monthly, not the female kind. The first week of every month I go through the same thing. It lasts about 1 week. Its not hormone, had all that checked, had a hysterectomy a year ago and only have 1 ovary left now. for aprox 1 week I am stuck in my house due to the issues I get a strange dejavue type feeling, then a sense of smelling something almost, followed by either extreme nausea and or vomiting and passing out. This happens repeatedly through the day for almost a week. I cant go anywhere it happens so often, I dont always pass out completely, sometimes its the beginning black out feeling, then lets up. I have been tested for seizures, cat scans, mri's, you name it, no one can figure it out. With my N being treated I am not 100% better but enough that its been nice, My pain is still high but I manage, then I hit my week of ick. And I have charted for over a year, with no variation its always the first week of every month, well foe some reason thats even changed, it started yesterday out of the blue. Its the same as always other than that. During this time I also am very very tired, more than normal. I can sleep all day, waking only when this feeling happens, then right back out, there are times its hard to wake me up. I am so grateful my mom lives with me so she can help with my children. This has happened for years, but not always for as long, it started as something that happened here and there, then became more frequent. I have had so many tests to try to figure it out, and no one has a clue. We normally try to plan around the week it happens, knowing it will mess up plans, and now its changing. Could it be anything to do with N? I also have cataplexy, and the more I learn of it the more I realize I have it pretty bad! It amazes me. My son said to me, mom I have a funny joke, sit down so I can tell you with out you falling! It was amusing.
Anyway does anything like this or similar happen to anyone, or any ideas? I would love to have something to tell the doc as a thought on cause. My docs are awesome, they listen, believe me, and follow up on ideas. But they are stumped here. Not wanting to rack up more bills, but also not wanting to do nothing. With each month I drop anywhere from 5-20 pounds when it happens.
I also have more memory issues during this time, if I am trying to recall anything from past, anything more than a few years ago it seems to trigger it, sounds insane, but if I think of a memory from the past very often it brings it on, even at other times of the month some memories seem to. I cant find any similarities in type of memories. It just happens, thinking hard, a memory and then dejavu feeling, then a weird smell or sense of smell and then feel like passing out and vomiting.

[mayfield]

Cyclic vomiting syndrome?

CVS


Sorry. That sounds terrible. If I get really run down/stressed I gag/throw up, but nothing like what you're describing.

[ladyjae]

does not sound quit right, close but not right. I am so tired of it. Sometimes i wonder if I somehow keep causing more illness, making myself get more and more. I know I am not yet still wonder ....
How is it one person can have so many things wrong? Why?
tired today

mayfield, on 28 July 2010 - 09:54 PM, said:

Cyclic vomiting syndrome?

CVS


Sorry. That sounds terrible. If I get really run down/stressed I gag/throw up, but nothing like what you're describing.

[Lisa Kato]

A lot of the symptoms you talked about could be associated with migraine. I dunno tho. Sounds like a bummer.

[Linsang]

Just as a thought, from what I understand about the body (which I am not a medical doctor, so take this with a grain of salt) what you are describing may be something to do with your brain. I have heard stories of people with very odd symptoms that were eventually found to be due to a very rare brain tumor. I don't think the tumor can kill a person, and I can't remember what it is called but it can only be seen with some sort of particular MRI (they inject you with a certain dye that highlights this type of tumor)

Sorry for being sort of vague, but maybe this is something to look into? Even if you have had MRI's in the past, they don't have the best resolution and it may be worth talking to your doctor about the possibility of different imaging techniques.

Good luck on you search!

[narcshark]

It sounds like part of the issue you are having is olfactory hallucinations (smelling something that others don't smell). People who have this type of hallucination may be able to describe the smell in detail, and they can have reactions to the smell, such as vomiting in reaction to a horrible smell. Olfactory hallucinations are also called phantosmia, and having them can be a sign of a serious medical condition. The most common cause of olfactory hallucinations is brain damage, followed by brain tumors, epilepsy (specifically temporal lobe seizures), and then migraines. Bottom line is, you need to see a neurologist right away. If you don't get answers, find another neurologist and keep going until you find an answer. Let them know you are having olfactory hallucinations on an intermittent basis. My guess is that you may have some type of temporal lobe seizure issue, since these are not happening all the time....make sure they do the tests on you during your "bad" week of the month, otherwise they might miss it. Let us know how it works out for you.

[ladyjae]

Thanks for ideas. The hallucination idea has come up before. I have been checked for seizures, had MRI, CAT scan and a few other tests, all show normal. i do have a history of migrains, I never thought about it but it will be something to ask doc about.

[Saraiah]

Have you had a portable EEG during one of those bad weeks? It's impossible to detect seizure activity when it's not happening, and often seizures don't cooperate by happening when you happen to be getting an EEG in the Dr's office. They have fancy gizmos now where they can wire you up, and then send you home with an EEG machine hooked to a belt that records what's going on as you're going about your daily routine (or lying miserably in bed). I had one- just take a hat, since going home with electrodes stuck to your scalp looks pretty odd.

[Saraiah]

Have you had a portable EEG during one of those bad weeks? It's impossible to detect seizure activity when it's not happening, and often seizures don't cooperate by happening when you happen to be getting an EEG in the Dr's office. They have fancy gizmos now where they can wire you up, and then send you home with an EEG machine hooked to a belt that records what's going on as you're going about your daily routine (or lying miserably in bed). I had one- just take a hat, since going home with electrodes stuck to your scalp looks pretty odd. When I had mine, they asked me to note on paper the time when I had hallucinations (which turned out to be diagnosed as narcoleptic, not epileptic, years later). So you can mark down the time when you have the olfactory hallucinations/vomiting/etc., and they'll go look at the EEG recording right around that time.

[ladyjae]

Didnt know they have portable eeg machine. I will ask about it. My normal cycle has gone off the last month, I am all sorta messed up with it. I have another app next week will see what I can find out about portable machine, and other possibilities

Saraiah, on 15 August 2010 - 01:07 PM, said:

Have you had a portable EEG during one of those bad weeks? It's impossible to detect seizure activity when it's not happening, and often seizures don't cooperate by happening when you happen to be getting an EEG in the Dr's office. They have fancy gizmos now where they can wire you up, and then send you home with an EEG machine hooked to a belt that records what's going on as you're going about your daily routine (or lying miserably in bed). I had one- just take a hat, since going home with electrodes stuck to your scalp looks pretty odd. When I had mine, they asked me to note on paper the time when I had hallucinations (which turned out to be diagnosed as narcoleptic, not epileptic, years later). So you can mark down the time when you have the olfactory hallucinations/vomiting/etc., and they'll go look at the EEG recording right around that time.