It's supposedly a migraine BUT I HAVE NO PAIN please help me!

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virtual insanity
New Member


Date Joined Nov 2006
Total Posts : 9
   Posted 11/10/2006 1:42 PM (GMT -7)   
 
  PLEASE READ AND HELP ME IF YOU CAN
 
Hello there!!
 
I am looking for some suggestions or help in anyway.
 
I am 23yrs old and for the past 3yrs now every winter I have these strange "funny do's" as I call them.
 
To cut a very long story short from November to March (the coldest time of the year)I have:
dizziness
blurred vision
pressure in the face and head
I feel completely drained
can sometimes affect my speach, walking being able to do things I am capable to do ie spell, think rationally, to think at all sometimes!!!
 
At its mildest it's as if I've been on a wild drinking session the night before, but without feeling sick, or that feeling when you just wake up, you know your heads all over the place you can't manage anything untill you've had a brew and some toast... But then it lasts all day??? I will have this feeling alone for 5months now and will not be able to shake it, at it's worst I will get the above symptoms.
 
The thing is I have no pain whatsoever, bright lights and sound can irritate me but only when it's at its worst. I have had CT scan and an MRI which have come back ok.
I've had my blood tested for diabetes, thyroid, kidney you name it and I think I've been tested for it more than once.
 
I am being tried on drugs for migraine and the next step is epilepsy as they say my symptoms are covered by both (I have never had a fit).
 
I am looking for help and suggestions if anyone else can shed some light or that has gone through this themselves. Every winter I am having lots of time off work. I can't go out I can't go to the gym I can't do anything.
 
Short of moving somewhere with a warmer climate I'm a little stuck!!
 
Please please can you help me
Virtual Insanity

Annuk
Veteran Member


Date Joined Jan 2006
Total Posts : 1308
   Posted 11/10/2006 3:37 PM (GMT -7)   
Hi Virtual Insanity,

Welcome to Healing Well. Sorry you are having a tough time with this. Sadly I cannot shed any light on this for you myself. My only suggestion would be that you post your story on the Epilepsy Forum as well to see if anyone there can identify with you at all.

It may be that someone here will come along and be able to understand - I truly hope so! Please keep in touch though and let us know how you get on.

take care

Ann

Brad69
Regular Member


Date Joined May 2006
Total Posts : 45
   Posted 11/10/2006 8:58 PM (GMT -7)   
 Does any of the medication help at all ?

thornappleriver
New Member


Date Joined Nov 2006
Total Posts : 12
   Posted 11/10/2006 9:07 PM (GMT -7)   
I have painless migraine and it is a bit of a shock when you discover that is what it is.

I have had the same experience as you for decades. You are very fortunate to get diagnosed so soon! That's fantastic. It was thirty-five years for me. I had no idea what was going on for all that time and was misdiagnosed with several different conditions. I have vestibular migraine and eventually it has caused hearing and balance problems, but when it started I just felt the head pressure, confusion, and kind of hangover experience that you describe. I thought it was allergies. Antihistamines actually are somewhat helpful for me.

If you want to compare symptoms with me I'll be happy to share. I have developed a lot of coping strategies over the years that may help you, as well.

There is more you can do yourself; lifestyle changes, change of eating habits, supplements, identifying triggers (tomato is one of mine) and things like that. Pick up one of the books out now about migraine and you will learn a lot and my find something that is helpful in reducing your symptoms, or at least in understanding what is going on.

At least while I am trying my best to be proactive, I don't feel like I am always at the mercy of this disease, and that reduces anxiety, another trigger of migraine for me. This may be helpful for you, too.

virtual insanity
New Member


Date Joined Nov 2006
Total Posts : 9
   Posted 11/11/2006 9:33 AM (GMT -7)   
Thank you for your replies!

I find that the medication doesn't help in the slightest, they don't seem to actually be addressing the cause but the symptoms, and with the fact I only get them in winter I have to wait till then to try anything.

I have a varied diet don't eat fried foods, chocolate and crisps I have as occasional treats. I drink at least 2ltr of water every day I don't drink caffine at all. I try to do at least 3hrs a wk of excersize but when it comes to winter and these start I find it difficult with my balance and walking. My consultant asked me how much I drink, admittedly when it's the "safe" months I drink 1 possibly 2 nights at the wknd with an occasional glass of wine with a meal. During winter I hardly get to drink at all!! Or the suffer the consequences!!

I'd love to chat further with anyone at least we're not alone!! Let me know how though I'm a bit of a technophobe!!

thornappleriver
New Member


Date Joined Nov 2006
Total Posts : 12
   Posted 11/11/2006 5:45 PM (GMT -7)   
I think that it happens in the winter only is a good clue...you need to sleuth out what occurs in the winter that doesn't in the summer. The furnace? Anything else?

virtual insanity
New Member


Date Joined Nov 2006
Total Posts : 9
   Posted 11/12/2006 7:12 AM (GMT -7)   
So far it is just the winter ie cold and I have experienced some symptoms after flying (but not enough to ruin holiday!!).

After being off work for over a week I have been at home where the temperature is a constant and has made no difference although I have noticed that my symptoms have eased which I think is from not being at work where they are now pecking at my head which is then again making me worse!!

But I am stuck in a catch 22 situation I want a new job but with my sick record who's going to take me on!!

The consultant is thinking of putting me on topiramate (i have just tried amitriptyline and found this of no use) but I don't think this will be of any use either as from what I have read up is to reduce pain, which I don't have?? I have been on asprin for the past 3days and found that I feel a bit more "normal" and awake! Although I'm not too sure whether this will help in having to go back to work??

AAAAAAAAARRRRRRRRRRRGGGGGGGGGGHHHHHHHHHHH!!!

Annuk
Veteran Member


Date Joined Jan 2006
Total Posts : 1308
   Posted 11/12/2006 7:30 AM (GMT -7)   
Hi Virtual,

I have been thinking about your situation and wonder is this is connected with when you have heatings systems on in the winter.

Many years ago I had not only an increase in headache but other symptoms aswell, lethargy, sometimes dizzy and a general feeling of malaise. To cut a long story short it turned out to be the gas fire in my living room was giving off fumes that were making me feel like that.

I am just wondering if either your heating system at home or at work may be affecting you. It might be good to explore this if only to rule it out?! Just a thought!!

take care

Ann

virtual insanity
New Member


Date Joined Nov 2006
Total Posts : 9
   Posted 11/12/2006 8:33 AM (GMT -7)   
Thank you for that, I do believe at work there is something very dodgy about our work place, there are a lot of people who suffer from vertigo and associated symptoms which i find a little suspicious and I think is related to the lighting and heating of the building. Which I think just meets regulations, but by a margin I'm sure.

when it comes to winter months and i am feeling like this i feel better on leaving work at 5pm, which says a lot!

we don't have gas fires at home but do have carbon monoxide detectors around the house, better safe than sorry!

Annuk
Veteran Member


Date Joined Jan 2006
Total Posts : 1308
   Posted 11/12/2006 9:39 AM (GMT -7)   
Hi Virtual,

It may be that the air ducting is harbouring something at work, or maybe giving a passage to fumes from somewhere say in the boiler room. This sounds a little worrying as you say there are others experiencing symptoms??!!

is there any way you can get this checked??

take care

Ann

virtual insanity
New Member


Date Joined Nov 2006
Total Posts : 9
   Posted 11/16/2006 3:28 AM (GMT -7)   
I'm going to try and sort something out and get it looked into. I have had further trouble at work which has really upset me I'm finding it hard work as it is sleeping at night at the moment, I feel so emotional I just want to cry all the time. It was the last thing I thought of before going to bed and the first thing I thought on waking up, I even dreamt about it.

I've tried to feel really positive this wk as well but looks like I'm back at square 1 again!

It's come as a great relief finding this site and all you guys I was getting to the point I was doubting whether this is all real or in my head - then again I suppose it is hahahaha!!

Annuk
Veteran Member


Date Joined Jan 2006
Total Posts : 1308
   Posted 11/16/2006 6:19 AM (GMT -7)   
Hi Virtual,

It's good that you can laugh at it! It is real too, but keep laughing!!! I hope you can get something sorted out soon.

take care

Ann

Nicky (coquitlam55)
Veteran Member


Date Joined Jul 2005
Total Posts : 505
   Posted 11/16/2006 4:53 PM (GMT -7)   

Hi Virtual,

I'm sorry that you're having such a tough time. I have heard of people who suffer migraines without the pain. I suffer many of the same symptoms you have with the pain (unfortunately).

My migraines get worse in the winter as well and that is because I live in a rainy climate. When the clouds come and a low pressure system I feel like there is a vice grip closing in on my head which triggers a migraine. We visit Las Vegas twice a year where it is generally hot (or at least warm) and dry with very little rain. I generally have a week without a migraine each time we go because there are no low pressure systems that come in and squeeze my head.

It's just a thought, but I definitely feel a lot better in the summer when we don't have as much rain.

Good luck. I hope you find something to help you through.


Nicky
Co-moderator Migraine Forum
 
I'm working everyday to overcome the pain and depression that comes from my chronic resistant migraines.
 
 


hopefulmigrainer
Veteran Member


Date Joined Oct 2006
Total Posts : 902
   Posted 11/16/2006 8:29 PM (GMT -7)   
Hi. I have read "heat" as a trigger and for me it is a BIG ONE. That and any kind of weather change. However, I despise the hot summer and especially heat with humidity. Not sure if electric heat would do the same thing but you might look into this. You should chat more with thornapple - it sounded like you shared the same symptoms. Also, a lot of chronic pain peeps are depressed. You can visit the depression forum for emotional support too. Hang in there.
Talk2Kel 
DX: chronic migraine, cervical degeneration, depression/anxiety 
RX: Wellbutrin, Lexapro, Soma, Immitrex 
"You don't find out that God is all you've got until God is all you've got."


SaraM
New Member


Date Joined Dec 2006
Total Posts : 5
   Posted 12/13/2006 3:09 PM (GMT -7)   
Hi All,

New to the board and a lifetime migraine sufferer. I went the last 29 years with just migraine pain and light sensitivity, but no other symptoms until I turned 35 and started having erratic migraine symptoms. I started having dizziness, severe nausea, pulsating in my ears, but no pain. I had an MRI done and everything came back normal. My doc told me that as you get older you can start having more symptoms with your migraines and put me on Topamax. He also told me that I was most likely having rebound migraines too because I'd sometimes get a full blown migraine and sometimes just those other symptoms. The doctor also said something interesting about the symptoms without migraine pain. He said that sometimes the body tries to go into a full migraine, but gets kind of "stuck". Whatever that means, the Topamax worked tremendously but I ended up going off of after a couple of months because I started having stomach issues, which my doc said were unlikely the Topamax was causing it, gave me something to help with the stomach issues, and said that should take care of it. I think more than anything I was uneasy with being on an anti-seizure med. I recently started having crawling sensations all over my body on occasion which I strongly feel is related to the migraines since my doctor told me that migraines can cause your body to do all kinds of wierd things. (MS has been ruled out on this symptom). I am strongly considering going back on Topamax and giving it another try.

Jenny R.
Regular Member


Date Joined Sep 2006
Total Posts : 162
   Posted 12/13/2006 3:50 PM (GMT -7)   
Sara M, I hope you see this and read it.  You said about the crawling sensations, I have these and I do suffer from migraines.  I have had a normal brain and c-spine MRI, except for a bulging disk at C-3.  Sometimes I just get athe aura, sometimes I get the aura and the pain, but everyday the back of my head hurts, like at the base of my skull, and I have the bug crawling sensations.  Does clothing seem to make yours worse?  For me it does.  What tests did you have done to rule out MS?  I worry tremendously about this because my gram had it.  Please get back in touch with me, so far your the only person that I have seen that says they have the same symptoms as me.  Thank you so, so much!!!

SaraM
New Member


Date Joined Dec 2006
Total Posts : 5
   Posted 12/13/2006 4:10 PM (GMT -7)   
Jenny,

I had an MRI of the brain done, but it came back normal. That was about 6 mos. ago and my general doc had ordered it. When I started having the crawling sensations about 2 mos. ago, I went to a neurologist who did some "evoked potential" tests, I think is what they are called. Just some basic movement test and reflex tests. I passed all of them, and so this neuro decided to pass me off to a dystonia specialist because I have focal hand dystonia and the neuro that passed me off told me the most stupidest thing I've ever heard. He said he believed the other symptoms I have including the crawling and migraines, are all related to the dystonia because it is rare, he said, for a person to have more than one neurological disorder. I have had the dystonia for years and it only has ever affected my handwriting and nothing else. Plus, I've done enough research on dystonia to know that the migraines and the crawling, etc. are definitely not dystonia symptoms. I feel like I've wasted $50 copay. So now I've kind of put off going to see anyone else right now because I don't know who to go see and I'm afraid of wasting another $50.
Who knows at this point. MS is normally manageable, and in the back of my mind, I think there could be a possibility. I know that they can do more MRI's to determine this, but $$$. Know what I mean. The crawling was horrible the week of Thanksgiving, and I think it was due to tremendous stress at that time. It has slowed down quite a bit, and if it does get bad, I take Klonopin to help with sleeping, but I haven't taken that in a while. It's kind of funny...today I had a severe migraine, took my Maxalt, and the migraine went away, but I am having a more intense crawling sensation today. I think once you turn 30, your body starts short circuiting.

Jenny R.
Regular Member


Date Joined Sep 2006
Total Posts : 162
   Posted 12/13/2006 9:45 PM (GMT -7)   
Sara M, thanks for the reply.  I'm 35, and seriously, since turning 30 its been a nightmare.  As far as two neurological disorders, my gram had MS for 17 years, then found out 2 years before she died that she also had Parkinsons disease, so sad.   I never had the evoked testing, just the brain, and c-spine, and also a lumbar, although this area doesn't get lesions, nothing was found after 6 years of symptoms besides a bulging disk.  So you are saying that the Topamax helped with the crawling sensations?  Do you ever get that feeling on your face also?  I have it on my face, legs, and back, sometimes my arms, but not that often.  As I sit here now, I can feel like I'm going to get the migraine, and its weird, because the crawly feelings have been pretty minor today, and also while I have the migraines, the facial tingling is not there.  It in between the migraines that it happens, but usually there on a daily basis.  Another question, do you feel that these feelings are worse before your period?  Mine is definently.  Migraines run in my family also, along with the MS, my mom and grandfather have suffered with migraines since they were young, mine started when I was 28, the weird feelings started 2 years after that.  It never gotten any worse in the 5-6 years, so I am hoping that it is migraine related, but llike you, there is always that thought in the back of my mind, saying, "what if".  I thank you for replying, and hope that we will both turn out to be just suffering from migraines, and nothing more serious.  I'll include you in my prayers tonight, thanks again, Jen

virtual insanity
New Member


Date Joined Nov 2006
Total Posts : 9
   Posted 12/15/2006 3:40 PM (GMT -7)   
I just want to say thank you to all you guys who have been on here to speak to, in the last 4wks I have had absolutely no symptoms what so ever, but during this time I have not been at work so the common denominator is my place of work, I'm off now with work related stress and the dr has diagnosed depression, even with the symptoms I am having with this I am having no migraine related symptoms, i don't know which I'd rather have right now? I know for a lot of you it is not as simple to be free from it but I just want to say thank you so much for being there and I hope there is something out there to make your lives easier.
 
I really do hope you all the best and a very merry christmas to you all
 
lots of love virtual insanity

daddyo1
New Member


Date Joined Dec 2007
Total Posts : 1
   Posted 12/5/2007 6:57 AM (GMT -7)   
well hope your doing well this year.
my son has 3 of these episodes 2002,2006 and 2007 all around the same time of year nov/dec

he gets sluured speech and his muscles in his legs feel wobbly and stuff

our doctor just suggested to us that this is what it might be

and it is brought by stress,activity.... but who really knows

he was diagosed with mitochrondrial cytopathy in 2002 . wich bascially effect his muscles to some extent thru the year when he plays . he stops he drinks more water than other kids and is on carotene for that .

we call him rare. but it would be so cool if its just migraine related

he is on c0q10,l-arlginene,thiamin and ryboflavin and his carotene.

he is 13 now. i think it will only get worse as his live proceeds .

mri has shown legions what these are or to get a striaght answer from a doc wel . anyway
if anyone can shed some light wonderful . thank you

needingknowledge
New Member


Date Joined Nov 2007
Total Posts : 15
   Posted 12/5/2007 12:01 PM (GMT -7)   
Hi Daddyo1 and virtual insanity (great names by the way) and hi to everyone else,
Daddyo1 I can't shed much light on the legions, hope someone else can. I know how hard it is to get answers from doctors sometimes. My one daughter was sick for for years and we never really got a straight answer. I feel for you and wish you only the best. I can tell you migraines are different for many people. I can tell you is that I get migraine without headaches and they appear like siezures (they are not siezures) They effect my speech, stuttering, double vision, blurred vision, tunnel vision, fluttering of the eyes, and shaking. (fun stuff huh ha ha) I know that for some reason hot showers can bring them on (wierd huh) also flourescent lights. Virtual insanity, I was also put on topamax and it does seem to help. but there are many other things people have found that help. But I agree with the others it has to be something from your work that is triggering it.
Daddyo1, is the coq10 helping? I heard alot of good things about that? Good luck and best wishes for both of you
Dar
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