Strange things

Hi all,
Well I have just come back from a neurologist app where he told me, without any strong apparent conviction, that I have (am) status migrainous. He also said that my symptoms were bizarre, and I suspect from his other comments that he thought that I was either making things up or imagining some things. So, I'm now wondering how strange and peculiar I really am. Would it be possible for people to comment on my symptoms to let me know if I really am some sort of medical freak. Here's the gist of it:

Every 6 months to a year I get an attack of something that last for weeks to (4+!) months. During an attack: I get very tired, my vision greys out, but bright lights become much more intense, I get photophobia and sound sensitivity, mild headace behind one or both eyes, sore neck, loss of balance (sometimes need help getting around), burning cheeks, intense sensitivity to fluorescent lighting, often a crushing feeling of claustrophobia (I want to escape from my senses!), intense feeling of cold, some weakness in my legs, a drunk foggy brain, some distortion to the geometry of my vision (walls don't seem quite vertical). As I said above these attacks come on and last for a long long time, but rather than just fading away, instead I seem to get daily variations in the intensity, such that I can start off feeling OK some days, but by the middle of the day feel like my head is swimming. Also, I never seem to get completely better, as if there is now some permanent damage.

Does this compare with other people's experience of migraines? I was starting to think that I had MS, but he didn't seem to even consider that a possibility.

Am I really that odd???? Or is this all pretty standard stuff?
Thanks for the help
M

Are you ok between these attacks? Or is it just during these bad periods that you have problems? Any idea what sets them off?

I think many people here can relate to at least a portion of your symptoms.
And while many of us have periods where the attacks are worse than others,
And some have extended attacks lasting weeks/months/even years, I have not heard
Of anyone with the type of periodicity you describe. But there may well be. There seems to be a lot of variations on what a "normal" migraine is.

In any case, don't feel like you are too weird. We're all dealing with variation of what you describe.

I am sorry that you are not only having to deal with your physical symptoms but also with the skepticism of your doctor. My migraine symptoms are very stroke-like and we share some symptoms.....I also get very cold, the fog does roll into my brain (to the point that I lose consciousness), lack of balance, sensitive to lights and patterns (to the point where I just need to withdraw from the world). Migraine symptoms can vary widely from person to person and also the symptoms can change over time.

Migraines are usually a rule-out diagnosis. Have you had any tests done to rule out other medical conditions? Do migraines run in your family?

It can be helpful if you can keep a diary of your symptoms and of your activities/food/sleep patterns so you can try and figure out what your triggers are. And you are not weird.........just like the rest of us.......dealing with a very frustrating and persistent neurological condition!

If I were you I would go to a different doctor. I have also had doctors imply that I was exaggerating or making stuff up. Those are not the people that are going to help you with anything!

Thanks for the replies. I really appreciate the effort

Are you ok between these attacks?
Not particularly. Its more that in the in-between times I think about things less, ie that I can cope. Today for example, I feel OK, but a bit tired and depressed, plus eyes are a bit sensitive.

Any idea what sets them off?
Maybe stress, hunger and tiredness.

I am sorry that you are not only having to deal with your physical symptoms but also with the skepticism of your doctor. My migraine symptoms are very stroke-like and we share some symptoms.....I also get very cold, the fog does roll into my brain (to the point that I lose consciousness), lack of balance, sensitive to lights and patterns (to the point where I just need to withdraw from the world). Migraine symptoms can vary widely from person to person and also the symptoms can change over time.

You sound "slightly" worse off than me. I can still function to a degree most of the time.

Have you had any tests done to rule out other medical conditions?
I had an MRI quite early on. I have a history of cancer so they wanted to make sure it wasn't a met in my brain. No visible problems. Usual blood tests for thyroid.

Do migraines run in your family?
"Migraines" don't but lots of other things of a similar nature do. My grandfather and mother were both diagnosed with meniere's. My mother's description of her symptoms sound quite similar to mine, ie walls bending over and light sensitivity, but she has only had two major attacks and each one seems to have damaged her hearing. My brother has gone almost completely deaf (sensoneural) for some unknown reason. My sister has had attacks of a type similar to mine in the past. These were diagnosed as low iron levels. Also, my nephew has sensory integration disorder. So there are numerous possibly neurological things in there, which ones are relevant I'm not sure.


If I were you I would go to a different doctor
That would seem to be the way to go, but I don't feel like I have many options. Both neurologists I have seen have been pretty dismissive of my symptoms. The last one said "I won't see you again". Not sure what that means, but presumably that I am either not bad enough to interest him, or that he doesn't know what's going on. I suspect both.

Thanks again.
M

Although I don't share your symptoms, I have heard of others that have some of the symptoms you describe.

I have had Migraines for the last 18 years and have seen so many doctors (including several neurologists) with little hope of finding anything that would really help me.

It does get very discouraging after awhile, but just keep on looking.

It took me almost 10 years to find a doctor that took me seriously and really listened to what I was trying to tell him.

Even though most preventatives have done very little for me, at least we tried them.(some of them more than once.)

I am on a daily dose of pain meds now and while it isn't really what I would choose to do in a perfect world, it gives me relief enough to do some of the things I need to do and even some things I really enjoy.

When the daily meds don't work, he gives me a Demerol shot up to two times per month.

We still try anything new that comes on the market and hopefully someday soon something preventative will work for me.

Anyway, you have to be your own advocate and go out there and keep digging til you find a doctor that works for you.

And although I certainly understand how you feel like a medical freak sometimes, we all are here to prove that you are not.

We all have different degrees of pain and varying symptoms but are all kinda in the same boat.

I have been a part of this site for many years and it is a Godsend.

When you feel hopeless, they will give you hope.

Sometimes just a kind word means so much to me.

Please keep us posted on how things are going for you.

Cindy

My longest migraine has only been four days, but I have had all the symptoms you describe over the years - never all in one go though. Interestingly, I did have a cloudy brain for a full three months and was tested for Lyme disease (had a tick after a long mountain walk months before), but it was all clear. I changed triptans as I was getting too many rebound migraines on the rizatriptans and suddenly, the fogginess was gone. I can't put it down to anything but that particular medication somehow affecting my body, as I only noticed feeling better after I'd switched to a different triptan, and the fogginess had started around the same time as I first started on the rizatriptans. Not sure if that's any use to you.

Finally, I vote for changing docs too. It's bad enough to have to cope with ordinary people thinking they're doctors and telling you you're making it up: you shouldn't have to put up with docs saying the same. Keep on searching until you find one who will listen and help - and all the best with coping until you find him or her.

That would seem to be the way to go, but I don't feel like I have many options. Both neurologists I have seen have been pretty dismissive of my symptoms. The last one said "I won't see you again". Not sure what that means, but presumably that I am either not bad enough to interest him, or that he doesn't know what's going on. I suspect both.

Well you are lucky to be rid of that guy. I can't imagine an answer that callous given the history of neurological problems in your family. It sounds like he is a very poor doctor indeed. See if this guy provides any useful relief. If not, try to find another that specializes in migraine. I'm not sure where you are geographically, but don't give up or let them blow you off. Keep trying untill you find someone who takes your symptoms seriously and at least cares about trying to help you.

I'm in New Zealand. I have seen two neurologists. The first one said "I don't know what the problem is. We can't do anything for you. You may not get better.". He then wrote a letter to my GP saying that he had put "my mind at rest"! At that point in time my vision was distorted and blurred to the point where I couldn't work. Now that particular neuro was the local migraine specialist! So I decided that I wouldn't see him again. So this neuro was my next try.

Its interesting when I hear of other people having useful interactions with their specialists. I have only found that my GPs have been friendly, helpful and interactive, even if they weren't completely knowledgeable in a particular area. My experiences with specialists have nearly always been negative and that's not only for migrainous stuff. Is this just a New Zealand thing?

My eyes cleared up yesterday (the greyness seems much less) for the first time in four months. My balance improved too. However, I'm still photophobic and sound sensitive and very tired. So something good has happened. Hoping very hard that I'm finally getting some relief!!!!!!

By the way. Am I the only male in this forum???

Marco,

I've also had very good luck with my primary care doctor because both he and his wife suffer occasional migraines. It's a world of difference in terms of how understanding and helpful he is. Whereas the 2 nueros I saw were pretty much jerks. They took me through all the various prevenative med options ( with terrible side effects they were not too undstanding about), but neither seemed terribly hopeful and one made it way worse. Maybe they have bad attitudes because they have found out how little they can do about so many of the problems people see them for?

So in my opinion, if your GP is more helpful and sympathetic, and willing to try the options with you, you may do just as well with him. The sad reality is none of them have any magic bullets for this, it's mostly trial and error, and different things seem to work for different people to varying degrees. Just don't give up!

Glad things are improving somewhat. If you have not tried supplements. I did well with magnesium (400 mg) and vitamin D (and so did my brother), without weird side effects. Butterbur is also on the list as helping some people.

BTW, there are quite a few males here who are regulars. You are just out numbered by women because unfortunately for us we get hit disproportionately by this disease. But I'm sure you can get some good guy support here too.

Marco1968, just to let you know that there a few of us males on the forum. My headaches are not episodic, but rather 24/7 of varying headache pain intensity. However, I do have some of the same symptoms as migraineurs like noise sensitity, lost of hearing of one of my ears, tight SCM and trap. muscles, and etc.

Martin

Its interesting how much variation there seems to be on the theme, ie a migraine is not always just headache but can run the gamut of different symptoms. Mxgo you say you lost hearing in an ear! Was that permanent? What (really really) scares me is that the next time I may not get my senses back. I don't think I could handle it if my vision was permanently impaired. I think that people in this forum are generally psychologically much stronger than me. They seem to put up with a all manner of hell but keep going.

It is not a complete loss of hearing in my left ear. Also, hard of hearing runs in my father's side of the family. And as you may have noted from other forum members, none of them have permanently lost their vision. As I said, my headaches are not migraines, but doctors do treat this type of headache (New Daily Persistent Headache), with the same drugs as they do for migraines.

Me, I am lucky, the headaches started after I had been retired for a few years. And I have managed, through some meds and alternative medicine type physical therapies, to lower the intensity of the chronic headaches.

Martin

I'm feeling pretty upset. Just got a letter from the neurologist describing his diagnosis. He said that my condition may be status migrainous but was probably more likely to be psychological. His main reasoning seems to be that I said I couldn't stand the lights in some supermarkets. In his write up he says that "but he copes with daylight which is four orders (ie much much brighter) of magnitude brighter!". But but... I told him that I was walking around with sunglasses on and that I had to hide in my darkened bedroom. Plus when I go into some supermarkets the lights seem very harsh and flicker and I feel very disoriented. That's what I meant. Can anyone else relate to that??? Do any of you suffer from flickery lights, or am I the only one??? Plus is my loss of balance, head pain and ringing ears psychosomatic?! Why did this psychosomatic illness give me my worse attack when my life was going pretty well rather than when I was stressed about life a few months earlier? What am I meant to do now? I struggle to cope with how ill I feel most days and now I have to deal with this diagnosis which suggest that I am effectively delusional.

I can relate to your sx's. My sense of balance becomes affected and I typically begin to drop things. My Mom,who also suffered for years, would bang into things. That's how she knew she was getting a migraine. It's so imperative to have a doctor who understands and listens to you. You certainly don't want to add to your stress. I can understand how you're feeling. I myself am very frustrated with my migraine situation. This forum has helped me for just the few days I've been a member. Good luck to you.

At the higher levels of headache pain, my sense of balance is also becomes affected and also drop things.

As to your neuro saying that your problem with lights is psychological, some doctors do tend to blame the patient when they do not know how to treat you. I have been referred to a pyschologist by a chronic pain doctor, when I was not responding to treatment. The psychologist said that some doctors do tend to send patients to pychologists when the patient does not respond to treatment. Others on this forum have had the same experience.

After making such a comment, I would wonder how extensive his experience is with migraineurs?

Google "flickering iights and migraines," there is a lot information on this aspect of migraines.

Martin

Run don't just walk away from this neurologist! It is very common knowledge that fluorescent lights trigger migraines. I can feel, see and hear those lights (they make me feel disoriented and I just need to get out fast)........I believe that a migraineur's brain is very sensitive to some environmental triggers and lights are on the top of my list! I am so sorry that the neuro is taking the easy way out and telling you that your problems are psychological.

It took me 12 years to get an accurate diagnosis.........when my migraines first started I was tested for anemia, diabetes and pregnancy and since all those tests were negative then I needed to see a psychiatrist. It was a family practice physician who first believed that I was not crazy. You said that your GP was supportive - please go back to him/her and talk over what your next step should be. Also, I would print out an article from a medical publication on fluorescent lights and migraines and mail it back to that neuro.............might help the next migraine patient he sees! Please stay in touch!

I would repeat my advice to find a new doctor; this guy is clearly not going to help you. That is not just an issue in New Zealand, either, I saw probably a dozen neurologists with many of them not taking me seriously. One of them even told my mother that I needed my tonsils out... Pretty much everyone who gets migraines knows how much of a problem certain light can be!

Yeah that is ridiculous. This doctor doesn't seem knowledgeable on headaches, nor likely to help you. Only a very small percent of chronic pain is caused by psychosomatic problems. I agree that doctors who are clueless are likely to push their patients onto a psychologist. I had a doctor do this once--I didn't respond to the first three treatments that were tried, so she said she wouldn't treat me any further until I saw a therapist. I actually have done this, but because I wanted to, not because a doctor required me to. It actually wasn't helpful for me, although it did confirm I have been handing the chronic pain well (I have strong coping strategies, a positive mindset, reasonable goals, etc). Hope you can find a good doctor soon. Best wishes.

That guy has no business claiming to be a nuerologist. It is definitely common knowledge that flourescents can be a problem for many people. Drop him off your list. He is far too incompetent to be worth worrying about.

Your symptoms sound a lot like what I experienced when I first started having migraines & meniere's. Have you been tested to be sure you're not having some kind of seizures? or Dysautonomia? I went to some horrible dr's before I was diagnosed with migraines, meniere's, seizures, Dyasutonomia & chemical sensitivity. Don't give up, keep trying to find answers. Best wishes!

I would like to thank you all for your support. I've been feeling pretty down about all this. I have been considering writing a letter to him to ask him why he put wrong information in the notes that he sent to both me and my GP. I suspect that it would be futile anyway. It seems like I just wasted a whole lot of money to get a very pointless piece of (dis)information.

I would like to see another (more competent) neurologist, but there are only three neurologists in my vicinity. The first one said that he had no idea. The second one said that I have predominantly psychological problems. So I don't want to waste time and money going to see the third one.

Sorry but I have to vent...

I believe that his problem was that he saw on my record that I had seen a psychiatrist. That was for anxiety because I couldn't concentrate at work. I think he read that I had seen a psychiatrist before I arrived and it was "game over". My partner was with me at the appointment and she described him as "tired and disinterested after a long day". I wouldn't have descibed his attitude in such a charitable way. What I find very telling is that I told him that both my mother and grandfather had been diagnosed with Meniere's disease. If he wanted an obvious answer he should have said that it was Meniere's, but instead he said psychiatric and did not even mention Meniere's. His mind was obviously made up before I even sat down. Just to make things clear. I saw an ENT specialist. She said that Meniere's was plausible, but that the visual problems were not a Meniere's symptom. I was also seeing the psychiatrist at the same time as my first attack. The psychiatrist said that there was no conceivable mental illness I could have that would lead to continuous pain, loss of balance and distorted vision. He told me to see a neurologist.

I also find it interesting that the neurologist states that my condition is subtle and predominantly psychological, but then says that there could be migrainous features. So, which symptoms are migrainous and which are psychological? He doesn't say. If my balance problems are psychosomatic, and the pain and visual problems are real, then that would not be a subtle and primarily psychosomatic problem, that is a significant neurological problem with a relatively minor underlying psychological problem. Plus he is ignoring the fact that six doctors and specialists have documented my balance problems. "Unfortunately" my balance was OK when I went to see him. If I consider the possibility that my balance problems are real and everything else is imagined, then the diagnosis would be Meniere's, considering my family history. I've been through all the different combinations, there is no logical way I can divide up this problem and get the diagnosis that he gets.

Why is it that if I were to get a plumber in to fix a leaky tap and instead he installed a toilet, then I would have a legal recourse to demand that he put the work right. But if I see a medical specialist for something and they do something completely illogical, then there is no way to get redress.

End of rant.

a great rant! sadly, an all too common scenario. dianne

Hi Marco,

I totally empathise with your rant -- the medical profession doesn't seem to like seeing a person who doesn't fit into the clean cut box of a diagnosis with easy treatment.

I'm slowly reading through back articles and now realise I made an assumption that you were female -- sorry about that! so please ignore my queries re pre-menopausal in another post (although apparently there may be a male menopause?). I guess that just goes to show about making assumptions! I'm not the sharpest pencil in the box at the moment....

I can relate to trying to figure it out -- the illogic of something that lasts for months with non stereotypical migraine symptoms practically drives me mad sometimes -- I just can't see how what I have can be status migranosus, but every time I go over it I can't see anything else. I am a very analytical person and a problem solver and I struggle to try and cope without getting caught up in having to fix it. It doesn't help that most people look at me like I have mental health issues when I mention any of the symptoms (unless they see me unable to walk), and they always ask and seem very disappointed when I say I don't have any aura.

The three neurologists that I have been to have just looked at me without saying anything about my symptoms at all. One said that he thought it would be gone in three months (he was right, but lucky guess or knowledge? no idea) . The first one (that I keep going back to) told me status migrainosus, but made no comment whatsoever on the symptoms, but he is keen to get rid of the headache and sympathetic, never indicating that it is all in my head or anything like that.

I have been to two psychologists to rule out stress -- both said no. The second proved very useful for helping me to make sure I had good coping strategies in place -- based on that I am getting better at meditation, deep breathing and progressive relaxation, which is helping me to cope better, although it isn't getting rid of the migraine. I also use cognitive behavioural therapy techniques to try and deal with stressful thoughts that just make it worse for me. The so called best neurologist for migraines here is impossible to get into (the one who told me three months) - with an appointment wait time of 7 to 9 months and an unwillingness for you to see anyone else in the meantime - so I am not comfortable changing over as I need support when things go completely pearshaped.

I am finding I have better luck with GPs and neurologist if I go in saying what I want (not pushy), but like, I need something to help me sleep or this drug isn't working.

I am quite new at this so my comments may be way off the mark.

Lynn

Hey Lynn,
Except for the "pre-menopausal" comment you are pretty much on the mark. Thanks for the comments.
I'm not sure I believe the "status migrainosus" diagnosis either. My feeling is that there is damage being done to my eyes and ears. That means that it probably isn't a migraine but rather some sort of autoimmune condition eg mild form MS. However, if I were to say such a thing then I probably would risk my membership of this migraine forum :-)
M