MamaEssie,

Oh, lord. I'm so sorry you are going through that.

I have a question. It's hard to communicate this clearly but I'm going to try.

Is it like you've simply forgotten where you are, like you know where you geerally are but are simply lost? Or is it more like you look around and the surroundings are completely unfamiliar? You recognize nothing? There's a big difference between the two. Those that have experienced both will know what I mean.

How long does it last?

Be clear on the answer on this before you call your neurologist. It's important for your diagnosis.

It was a weird combination of events. I got in my car and immediately tried to roll down the window that has been broken for over a year. I got to the grocery store and couldn't remember what I needed to get so I went up and down all the aisles and when I saw things I knew I needed them but my brain wasn't remembering words of the items but I recognized the items when I saw them. By the time I got to my car I put my keys in the ignition and couldn't remember what direction I needed to go. I knew where I was and where I needed to be but nothing in between. Fortunately I have a home button on my GPS.

I woke up this morning laying on my face, because the back of my head was too sore to lay on... uh oh..... i have been on 1.5g for 5 weeks now and i started to have niggley headaches this last weekend.
i have been wondering if my body would adjust to 1.5g. it only took me 2.5 weeks to adjust to 1g before my headaches came back at that level..... so i now am worried i am starting to adjust to 1.5g too.

however i have dont have problems with forgetting things, i just have problems thinking if my head hurts too much. so i am cautiously watching to see if this is a trend or a blip. What does SeaSprite say about your forgetfulness though, because that must worry you...

So it sounds like you felt spacey for a prolonged period of time. Not completely disoriented but higher levels of cognition were escaping you. Is that right? I have felt similar to that on occasion, though the most severe times were quite brief. It is very alarming though, which I think makes it even harder for our brains to "get it back together." Some of my less intense moments of this were spent at Target - like I'd feel too fatigued and spacey to focus so my trip there would become longer rather than cutting it short because I wanted to finish the task but my skills to do so were weak.

I'd call your doctor. In my own experience I don't believe there was a connection with Diamox (in fact I'm not sure I was even on it when I've felt similarly) but perhaps others here have had a different experience. You aren't on Topamax as well, are you? That seems to have a pesky effect on cognition.

Hope you are feeling better today!

Whenever anything significant and new pops up I think you should call your neurologist. Unless he's my neurologist, who I don't think wants a call, but that's another story.

It could be your meds, could be IH, could be something else your neuro needs to check for. Topamax is the main suspect in my book.

The reason I asked what I did: if you did not recognize your surroundings for seconds or minutes, or if you couldn't remember a short period of time (seconds to a few minutes) it could have been a possible seizure. In that case you'd need to be seen pronto. If familiar surroundings suddenly become unfamiliar it's a possible simple partial temporal lobe seizure. Looks like that's not what you had, thank goodness!

My head has settled down again - i think i ate some gluten last weekend by mistake (had a mini sushi roll from a new place and didnt check what type of soy sauce they use) - so i am glad to say looks like mine was just a blip not trend.
I hope you are feeling a bit better. :)

I have memory issues too, like trying to find the right words, forgetting what I'm talking about...mid-sentence, etc.... My main issues with memory are delayed retention. I can read something and forget what I just read but 5 minutes later it will come to me...very frustrating. I have also occasionally gotten confused about where I was at, particularly when driving, and forget how to get where I need to be, then it will hit me. Its kinda scary when that happens but I've had 2 ECGs and everything showed normal...no seizure linkage. It could be the medicine but my PCP thinks it is the disease messing with my body, kinda like I'm also experiencing early menopause symptoms but hormone levels look good. I'll deal with the memory issues, just make my headache go away!

I had a similar experience two days ago. I live in a small town, but I'm not from here and haven't purposely went to different areas. Well, while driving (not a daily experience, but needed to get out of the house for a bit) I realized I could either concentrate on others driving and walking or how to get to a different section of town. I was halfway to the next town before I fully realized where I was and that I was lost. I ended up turning on a main road and as soon as I recognized where I was, I pulled over to connect all the dots and get back home. Word of advice, GPS is your friend sometimes. :-)

I did call my neurologist but he is currently more concerns about my dehydration, muscle cramps etc. We are going to back off on the Diamox, which makes me sad as I'm afraid my head is going to go from a steady 6 back to a 10. I'm not in topomax yet. They want to start me as soon as I start my period and get back on my BC.

i am on a combo of both diamox and topamax (1.5g and 100g per day) - i think they work well together, I am still doing well.

I know not everyone gets on with the side effects of topamax - and also i personally didnt find it effective when used on its own. but as a combo i rate it and wouldnt want to drop it. so maybe even with easing up on the diamox you will find adding in the topamax helps you out. Lots hope for you, I know at the moment the priority is preventing a return to the high 10s but 6/10 is still a bad place to be so lets hope they can sort you out much better - but 6/10 will break you after several months - please dont settle for it long term.

I remember now that the NP made a big deal about getting you back on BC...a lot of docs that work with PTC make a big deal about getting people OFF BC. There seems to be a huge hormonal component for me that has made the difference between relapse and remission. Just something to keep in mind. Maybe there are acceptable non-hormonal BC methods? In my mind the BC would run the risk of counteracting any additional benefit from adding another medication but that is merely my own opinion.

My husband really wants NO more children. I've been fighting it, it may be time to just let him get the vasectomy and move on. I actually see my Neuro on June 12th and my 2nd opinion specialist in July. I'm really holding on til Then.