Migraine

Dont know how to put this --but i,m terrified

Some weeks ago (the end of January) I had a prolonged attack of migraine where i had some pretty bizarre and frightening symptoms (additional symptoms than usual ) that did not resolve as quickly as they could have. It was thought i,d had a stroke but after the MRI they said I had a prolonged TIA because of the migraine. I now understand the symptoms relating to the basilar migraine episodes are due to ischemia. Since then I have become terrified i,m going to die of a stroke or the symptoms are going to come back every time I have a migraine episode.

My neurologist had changed my meds three weeks ago but i,m still getting migraines on a regular basis. I have noticed too that they seem to come on around the same time of day (5-6pm). I didnt think anything about this at first and didnt notice but I started keeping my migraine dairy again because of the frquency of the attacks and realised there was this patten.

Has anyone else experienced this? I dont know why they start then? I do know i am getting tired by the afternoon, but dont know if this is just the symptoms relating to the start of the migraine as I can generally feel the slight onset of pain then ,at the back of my head. These episodes are relatively short compared to what they can be I pop my meds and by 9pm start feeling much better. Its the frequency thats getting to me, and are these episodes what you would call TIAS I dont know now.

Anyway being terrified/frightened to die --I hate this. I really feel my life is going to be short and cant get that out of my head. I also feel angry despite having this thing for most of my life and keep thinking i dont whant this thing. Why me?

I know the meds dont work overnight, I also realise i,m feeling sorry for myself - but i,ve lost my sense of humour about this whole thing.
I have tried to find a support group locally but you know what there isnt one!
So thanks you for letting me rant. Was hoping to feel beetter in just being able to confide, have my say, get it out of my system--I dont know. Any advice would be appreciated
Have I gone on too much-. Just want to feel normal again.

No, dearie, you haven't gone on too much. You just go ahead and get it all out.

I've just come off of a longggg week myself, filled with brain-busting beasties. The last one morphed up a back-of-the-head headache that wasn't a migraine, and finally was broken this morning. I've spent much of this week at work biding my time and surviving on pure German stubborness, not to mention dealing with assorted med-induced fuzziness. I get it. It's rather easy to feel sorry for yourself as days like that drag on and wonder what you ever did to deserve it. But it's not your fault, and it never will be. It's not something that you did. It just is. All we can do is plug along and prop each other up, doing all that we can to put it in its place. That's what you're doing with the med tweaking. And no, it won't work overnight. But I do know from experience that when it does work out, and you find that relief that I know you will, it will be worth all the effort, and it will be that much sweeter.

You just keep hanging in there, and come here when you need to. We'll listen, and we'll be here.

Janet,
When something with your health changes as significantly as it did for you, I can completely understand why you are frigtented.

You said the doctor changed your medications 3 weeks ago. It sounds like the migraines in the evenings have started since then? That is a pretty big change. I would think you would want to contact your doctor to see if this is expected behavior based on the medication he/she started you on. Three weeks isn't alot of time, but it is not just a day or two either. Did the doctor give you an idea of when you might start to see a change in the pattern of the migraines? You said you "pop your meds" and by 9 ok you're feeling better? Are you taking an abortive? If you are having to take something to abort a migraine more than 2-3 times a week you are in danger of having a migraine over use headache. I've included a link to information on them for you MOH.

You mention in your post basilar migraines, so again I've included a link regarding information on them for you. basilar migraines.

Information and knowledge about what you have can be very enpowering for you. I hope the information above is helpful to you. Migraine disease in any form is very painful and frustrating. I hope the information helps you.

Cindy

Cindy

Janet, it's understandable that you're scared. Migraine disease is not an easy thing to deal with and a lot of the symptoms can be scary, especially if you have basilar-type migraine.

I second Cindy's suggestion to contact your doctor and let him know what's going on. Then at least you'll know if you should be worrying. In general, whenever your pattern or symptoms change, you should contact your doc so he can determine if it's something that should be checked out.

Do you keep a migraine diary? It's possible you're encountering a trigger at the same time every day. A diary is a really good way to start identifying your triggers and seeing patterns. Even if you don't, sometimes your doctor can see a pattern. We have an article about diaries on this site, along with a few different formats, which you can find HERE.

Cindy also had a good thought about MOH. Take a look at the link she gave you.

Let us know if you have any other questions. Know that we're always here for you and do understand what you're going through.

Thanks for all your support
I didnt think about MOH, --I,ve read the link and its true lately I am taking more pain abortives than usual, sometimes more than 4 times a week.
I ,m going to make an appointmrnt to see the doctor ASP for next week to discuss all my meds. Only problem is she is not too familiar with B.Migraine and is reluctant to make changes without authorisation from my neurologist which will mean another wait. But I,ll see how it goes.

Feel that if I get soome relief from symptoms it might be easier to re-group and try to be a bit more positive.
Just feel my life has halted at the moment, and i,m being worn down.
In January I was working part time and was able to function and get on with a life, but at the moment things have stopped because of this. If I could get the symptoms to settle down and get back to normal maybe I would become a bit more positive again. I hate feeling sorry for myself but at the moment feel its difficult and feel frustrated.
Dragondrool-- I going to try to apply a bit of that stubboness you talk about and keep on going- its all I can do I suppose.
its just good to know there are other people who understand and thanks everyone for letting me talk. I will let you know how things go

Janet I am so glad you posted again and you seem to be feeling a bit better. Something you posted though concerned me that the doctor you will be seeing doesn't know alot about basilar migraines. Since that is what you have, shouldn't your follow up at this time be with the doctor who knows about them? I'm not familar with the English medical system, so that is why I am asking.

You do sound better. Please stay in touch with us. We're here for you.

Cindy

Well, whenever yours wears a bit thin, I will loan you some droolie gumption and droolie stubborness. Promise.

quote:

Originally posted by Janet:

Dragondrool-- I going to try to apply a bit of that stubboness you talk about and keep on going- its all I can do I suppose.

Thanks Cindy


yes I think the system may be diffrent here
I have mannaged to get an appointmet for wednesday at the earliest with my general practitioner. The last time I tried to ask my doctor questions she said her knowledge of basilar migraine was limited and she refered me again to my neurologist.

I think i,ll probably end up seeing him again to put things right but lwill have to see her first.

I realy think now my new medication is not working or needs increasing.

I,m also wondering if the new med is contributing towards the anxiety.?

christian- I am already on aspirin and am planning to ask for something for my anxiety when I go to see the doc.
Honestly i,ve never felt so anxious -- before all of this started to happen I was ok and i,ve had some events because of the migraine in the past.

I think the nature of the symptoms, not being able to swalow, along with other "normal"( normal to my migraine) things I experienced and the duration of the symptoms when I thought this thing was not going to resolve realy frightened me.

Ive asked before about my risk of permanent damage due to stroke and the neurologist said my risk factors was low and not to worry its rare to have a stroke with basilar migraine-- but you know- was he saying that to reassure me, because he knew my fear after the last event.

Its the regularity of symptoms at the moment thats bothering me-- I,m thinking are they leading up to another event where I wont be able to swallow. If the Aura symptoms and headache would settle down maybe the anxiety would settle down --I dont know.

I,m hoping if the meds get sorted, things will settle down again. If I was able to go back to work maybe I wouldnt think about things as much
I feel guilty feeling anxious/frightened re this thing as I know others are battling with the same kind of problems and I am not a unique event.

Janet,

I'm sure you're terrified, and I am glad you're taking steps to resolve your medication situation.

I didn't see anyone else posting yet about swallowing episodes, and I wanted you to know that I get transient attacks of paralysis and numbness on the whole left side of my body, including all my throat muscles on that side, as part of my really bad attacks. The first time it happened to me, I truly thought I was going to die. My throat muscles were so paralyzed that I couldn't speak for a bit, and I could only swallow my own saliva with difficulty.

It's my understanding that with very complicated aura symptoms such as these, the episodes tend to linger for a longer time than a more stereotypical visual aura, for example. I can tell you that over time, my "collapsing throat" (as I think of it) symptom has become less bothersome when it occurs. Partly, I've learned not to panic about it. I take my abortives, and wait for it to pass off. I find that consciously relaxing, breathing slowly, and finding a comfortable position really helps.

You are NOT the only person who has seemingly bizarre aura symptoms. Mine run the gamut from irregular heartbeat to aphasia to loss consciousness to left-sided paralysis -- you'll be working hard to find a doctor who understands complicated migraine. I remember my first experiences with these symptoms, and it was scary, scary, scary. However, that was 9 years ago for me. I'm not symptom-free by any stretch of the imagination -- but I had an MRI recently and it was clean, despite years of these attacks. I hope it helps you to hear that. Just treat it like an aura that merits observation and medical attention, tell your doctor everytime something new happens, and work on getting your meds on track. It will be OK. Truly.

Best of luck to you. You won't always be terrified. I guarantee you. I am on day two of a hemiplegia attack myself right now. And I'm alive and typing!

Lynne

Was the spot on you MRI the only thing they've ever seen that suggested a TIA? I have always been concerned about damage from migraines and my neuro told me that lots of people have small white dots about the size of a pencil eraser on their MRI's. He was surprised that I didn't have any...but he also said that if I do get them ...they don't generally cause problems, because they're so small and the rest of the brain compensates for that small area. He said he's seen brains with spots peppered all over it...and most of those people are doing fine.

I was incredibly surprised to see that the results of my last MRI were clean. Hadn't had one for years. I expected some changes. I don't think the medical community really knows yet what to make of migraine related brain changes anyway. That research is changing so fast.

I had the exact same question as the previous poster - are they absolutely sure about that TIA diagnosis? I mean - hemiplegic migraine is such a rare condition that even some of headache "specialists" have only seen a few cases in their lifetime. I wouldn't be so sure about that TIA thing till I'd seen somebody with a lot of experience with hemiplegic migraine with basilar involvement.

Hope this helps.

Lynne