Advice wanted please

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Advice wanted please

Post  geekfairy on Mon Mar 28, 2011 4:31 am

Hi,

I have been trying to figure out for a long time what the cause of my symptoms are, and quite by accident last week a google search result pushed me in the direction of migraines.

I do have a appointment booked with my doctor for next week, but in the mean time I just wanted to see what other people think and benefit from your experiences...however awful they may be!

About six years ago I started smelling smoke when there was none. It was an intense smell and would come and go. Other than smelling smoke at times, my sense of smell is fine. My doctor sent me for a CT scan, thinking it was sinus related. Actually he wondered about epilepsy, then he said he was stumped and agreed a CT scan was a good idea. Scan was clear. No chronic sinus infection shown, no lesions, midline shift or anything else nasty happening with my brain. This was in 2005.

I have suffered with headaches for many years and with quite severe neck pain thanks to a bad whiplash. I started seeing a chiropractor in 2006 and she did wonders for my neck, which helped a lot with reducing the headaches.

During this time, and a bit before, I would from time to time get a tingling, sunburnt sensation on my scalp and face, always on one side only. Sometimes it would cover one whole side of my face and I'd have a sore throat on that side, but mostly on my scalp to cheekbone.

Last year I got frustrated with the tingling and my doctor sent me to a neurologist. She asked a bunch of questions and seemed quick to put the tingling down to low iron once she found out I've been a vegetarian for 20 years. She said she was sure the tingling/smoke smelling wasn't disease related.

Over the last six months I find myself getting frequent headaches, most of which I have been putting down to sinus issues. I used to suffer badly with sinus problems each times I had a cold, but have lost count of the amount of times I have told friends that it is weird that I can breathe perfectly yet have all this sinus pressure and smell smoke so frequently.

Trying to cut my long winded story short here Very Happy

Last week, as another headache was building and I was having waves of nausea and feeling pressure across my cheekbone, I decided to Google headache sinus nausea and found most results were articles telling me that what I had wasn't sinus related, but instead a migraine. So i have been looking into it more and so many symptoms fit perfectly, yet some I am just not so sure about.

If you've made it this far, thank you! I'm almost done.

I started keeping track of symptoms last week, just to try and see if any of it makes more sense that way.

Quick summary is that I generally have one sided headaches, but sometimes just a band across my forehead.
I smell smoke frequently, for a few minutes at a time usually. Sometimes not for weeks, but often several times a day.
I get a tingling, sunburnt sensation across my scalp, usually one sided.
Lately I have been getting nausea for a few hours before a headache, and sometimes for a while after.
I often feel a bit foggy when I have the tingling sensation, that's about the only symptoms I had put together over the years.

I'd say about once a fortnight I spend the day on the lounge due to a headache. I have very mild sensitivity to light, but perhaps no more than anybody with a headache would have. Certainly not the horrors many of you suffer.

Sorry for the epic post. Please let me know what you think based on your experiences. My initial thoughts were that maybe I had finally found the aner. My concern is the freqency that I smell smoke and whether that could truly be an aura if I have it so often?

I have only been keeping a diary of symptoms since March 20th, but my week went like this;

March 20- tingling scalp, smelling smoke, nausea
March 23- smelling smoke 4 times during day, few hours apart
March 24- smelling smoke twice in morning and again at 10pm
March 25- smelling smoke 7 times between 1pm - 11pm
March 26- 8:30am - slight headache and wave of nausea
- 10:40am -tight throbbing on top right side of head, pressure under right eye on cheekbone
-11:14am - smelling smoke, band eadache across forehead, feeling irritable
-12:45pm - mild headache, tight neck, foggy head, slightly runny nose
- out all afternoon visiting a friend. smelt smoke twice, nausea all afternoon, mild headache
March 27- smelling smoke off and on in morning, mild nausea, mild headache
-4pm 0 moderate nausea, smelling smoke. nausea in waves. moderate headache, across forehead and pressure/pain across cheekbones.

At that point I stayed on the lounge and eventually fell asleep there. Woke up and went to bed, headache wasn't quite as bad by then. Today I have had mild nausea most of the day, slightly tingling scalp and my headache has pretty much gone.

This is pretty typical of how it goes, although the nausea is pretty new.

I feel like a hypochondriac just writing all the symptoms out and feel like I need to apologise. I know most, if not all, of you have been suffering with far worse symptoms for longer than I have, but I really want to have a better idea of whether it is likely to be migraines *before* I go to the doctor, so I can make sure I don't get brushed aside. I find having a vague bunch of symptoms tend to get you nowhere at the doctor Rolling Eyes

Thanks again for reading through this epic, and apologies if I have given too much or not enough info. Or bored you senseless Wink

geekfairy

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Re: Advice wanted please

Post  Enigma on Mon Mar 28, 2011 8:17 am

Hi Geekfairy

I'm going to take a stab at it with my 'opinion' because that is all I can offer. My experience with doctors is that they can tell when you are trying to steer them in a direction so it is best to just give them the facts. That list you have since March 20th is excellent. Answer his/her questions and let them come to their own conclusions as to the best way to help you.

As for if I think it is migraine related, I'm not so sure. I reads more like a sinus headache. BUT I don't experience all kinds of migraines. I only expereince one kind of migraine which is very distintive on one side of the head, above the eye, and a very sharp pain that lasts hours or days.

I just went through a clinical trial 2 months back and there was a long list of aura symptoms and it covered slurred speach, blurred vision, feeling hot, being energetic, and a few others that I can't recall off the top of my head right now. Smell was not on the list.

Having just said what I just said in the paragraphs above, there is so much unknown about Migaines at this time, so what you have could very well be migraine related. But because migraine science/treatments are all over the place, you might however be better served in another field of illness.

Which leads us back to your doctor. Give him/her all the facts, put your trust in their ability, and ask questions.

All the best to you.
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Re: Advice wanted please

Post  Paradox on Mon Mar 28, 2011 8:41 am

I sometimes have olfactory hallucinations, usually right before a "big one". I usually smell natural gas that no one else can smell. So yes, mystery smells can be a symptom.

Good luck at the Dr.
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Re: Advice wanted please

Post  Jewishmother on Mon Mar 28, 2011 10:47 am

Certainly you could be experiencing migraine symptoms but for a lot of us a diagnosis of migraines is one we come to after our docs have ruled out lots of other medical issues. My experience with aura symptoms is that they can come and go without pain - I can have facial numbness and scalp tenderness on and off all day before the rest of the migraine hits. Have you ever had a ct scan of your sinuses? Might be worth a try but I think many times people do mistake migraine symptoms for sinus issues - I know I did for many years. Besides keeping a diary of your symptoms you might also like to keep a record of what you were doing/eating/etc... around the time that the symptoms occurred. Does anyone else in your family have migraines? If yes, that could also be an indicator that what you are experiencing are migraines. They have such varied and frustrating symptoms - many of which docs tend to blow off...........please keep us posted and let us know how your appointment goes! Leslie
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Re: Advice wanted please

Post  jwar on Mon Mar 28, 2011 11:23 am

I have phantom cigar smoke as an aura sometimes, and frequently experience the tingling sensation you describe.
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Re: Advice wanted please

Post  stephgood on Mon Mar 28, 2011 2:43 pm

Well, hmmm... I rather enjoyed reading your post! With all of this going on, you seem to have yet a sense of humor!!! No need to apologize for anything! I have never had phantom smells. I have what I call, a super-duper smeller. Could the cigarette smoke be coming from somewhere else? Do you live in an apartment or anything? I can smell stuff waaayy down the block. I can even smell the tiniest amout of stuff. I can catch a natural gas odor no one else notices, and eventually call the gas company, who can't smell it, but use a tester and what do you know? There it is!!

Keep up with the diary of symptoms and definitely note what you are doing, eating, the weather, etc...It may sound like a lot, but if you can narrow anything down, You will be glad you did it. Also, most Neuro's will make you do this at some point. If you can go in somewhat prepared, why not? Please let us know what the DR thinks and decided to do. Everyone on this site is interested in seeing what treatments work, or don't work, ina way to help themselves, as well as others. Good Luck.
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Re: Advice wanted please

Post  Migrainegirl on Mon Mar 28, 2011 8:17 pm

That's a pretty interesting story. While I don't tend to smell things, many other people have posted that as a symptom. It's interesting though that you seem to get the smoke smell many times when you do not get a headache, and not just when you do. Do you perhaps get what is called a silent migraine? It had many of the same symptoms, but without the head pain part.
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Re: Advice wanted please

Post  geekfairy on Mon Mar 28, 2011 10:55 pm

Thanks so much for all the replies.

There is definitely no smoke around when I smell it, and I have found that I can detect a difference in the smoke I smell and real smoke. For example, we had a bushfire in the distance over the weekend and there was smoke wafting in on the breeze. I looked up at my husband and said "That smoke is real" and he nodded. Seems to have a slightly crisper, cleaner smell in some way.

A friend is positive I am having silent migraines, but I still wonder about how freqently I smell smoke. I know almost nothing about migraines, having only started reading over the last week. However I wouldn't have thought I would smell smoke pretty much daily for sometimes more than a week even if it was a silent migraine....but as I say, what do I know? Laughing

I do agree about telling the doctor all the facts, and definitely don't want to push him in a direction but rather if I am thinking it is migraines I'll ask more questions about that instead of keeping quiet. I tend to keep quiet and not want to complain, something I will have to get over in order for him to get the full picture I guess.

2005 seems like a long time ago and it isn't too expensive here to have a CTscan done so I think it's probably worth having another one just for some peace of mind that there still isn't anything nasty happening in there. I missed an appointment today...some days it feels like nothing is happening in there Shocked

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Re: Advice wanted please

Post  McCabeRoad on Mon Mar 28, 2011 11:13 pm

I never had "smelling" problems with migraine however, if I get a real snootful of perfume or strong cleaning fluids or room spray scents or the worse is tobacco smoke, then I will get a migraine within hours and it will be a beauty!
My headaches are on one side at a time. I could actually draw a line down the center of my head and one side is pain and the other is not pain. My pain is NEVER throbbing, but instead they are a huge constant pain and pressure from the base of my neck and all the way up to my temple and behind my eye. It usually last three days and then relief for a day then hits the other side for one day then it eases off slowly, leaving me totally exhausted and feeling angry.
Thats my story.
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advice

Post  rileyoday on Tue Mar 29, 2011 7:02 am

If I was your Dr. I would start treating you for Migraine. I would use a low dose maxalt, relpax, or Imitrex.

I smell phantom smoke . Sometimes I wont smell it for months. I think most of your symptoms sound like the ones me or others have described. I hope they never progress further and you get good treatment.

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Re: Advice wanted please

Post  tecky on Sat Apr 02, 2011 1:53 pm

I often smell phantom smoke, natural gas, or sausage/meat frying. It's annoying to those around me and to me, too.

I agree that you've done a great job of recording the facts in a diary fashion. That will help guide your doctor in deciding upon a treatment for you. Good luck.
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Re: Advice wanted please

Post  30yrsofheadache on Sun Apr 03, 2011 5:51 am

Thanks for posting about the smoke smell! I too often smell phantom smoke that no one else smells. I am always dragging people around the house and outside to see if they smell it. Our next door neighbors house burned down several years ago and it was hard to get my family to go see.

I also smell sour smells like laundry left in the washing machine too long or a weird body odor smell. Why cant we smell something pleasant? I never have phantom rose smells! So, yes, I do think it is all migraine related. I have been having migraines for almost 40 years. Not sure how long the phantom smells have been with me. Hope that helps.
Hugs,
Cindy
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