I am not the kind of person to go to the doctor or take medicine unless I absolutely must.
About eight years ago in the fall I developed shingles and was treated with steroids. The treatment took a long time, because I didn't know shingles were serious and needed to be treated right away. I then began having chronic migraines and severe allergies (pollen, dust, mold mostly.) I was treated with several allergy medications and finally found Allegra-D worked best. The following fall I got very bad poison ivy and again was treated with steroids.
That winter, I complained to my ob-gyn that I was unusually grouchy and didn't know why, and he put me on Serafim (which is prozac, which I took at night.) My primary care physician thought that the prozac was helping me have less migraines. I had some narcotics from the doctor for migraines but rarely took them, because half the time they didn't seem to help.
Off and on I was put on Singulair to help get rid of chronic coughing following viral infections. My doctor said my immunity was low and had me take flu shots.
Then about three years ago, I went through an obviously manic episode and was diagnosed with bipolar disorder. At that time I was taking Allegra D and prozac. Since then, I've gone through two cycles of ups and downs while on several combinations of medications, lastly lithobid, wellbutrin, vistaril, Allegra D, wellbutrin, and Singulair--having Seroquel or klonopin on hand in case I get too anxious or can't sleep, which is rare.
On July 21st I had a lost filling in my tooth replaced, no problems, except scheduled to replace another filling that was cracked. On July 30th, I had what turned out to be three fillings replaced. I do not usually get a shot for dental work, but was talked into it since the doctor feared he would have to do a lot of work that could get close to the nerve. The shot (not the poke, but the time of injection) hurt worse than any dental pain I'd had, but since I had never had a large shot like this, I didn't know that was not usual.
When the numbness wore off, I was in the same pain as with the injection. It reminded me of shingles pain. It hurt/burned/tingled/surged everywhere that had been numbed before from my front right tooth/lip to my ear/jaw to my chin and bottom front teeth inside along midway of my tongue. My cheeks hurt inside and out. All my teeth on the right side hurt and upper and lower jaw. I was also sensitive to hot and cold, but not to pressure. Pressure was fine until released, then the area would hurt. That night I had a migraine.
(I've birthed three children and a kidney stone, so I know what pain is and would trade any of those for this last month's dental problems.)
The dentist gave me Tylenol 3, which did little to nothing. I dug out old expired Darvocet from when I had shingles and Percaset (for migraines) to take at night, which sometimes helped and others did not. On August 8 the dentist put me on a Medrol pack (steroids.) This reduced the pain immensely, and I had more of a tingling, like recovering from hitting a funny bone only in my jaw. I also noticed a metallic taste from time to time, although I did not get metal fillings. I passed it off as having oversensitive taste buds along with my oversensitive pain receptors and maybe a little blood around my gums. I tend to look for simple explanations that are not a big deal with quirks like that.
When the steroids where done, the serious pain started to return, and the dentist said to take ibuprofen 24/7 beginning August 14. Somewhere around the steroids and the ibuprofen, I started smelling cigarette smoke without a known source. No one around me smokes, but I thought it might be from a library book I was reading, and ignored it. The phantom smell got progressively worse.
I hate being around cigarette smoke. I get away from it as fast as I can, but I cannot get away from this phantom sensation. I kept looking for the source of the smell, kept sniffing my hair, took a shower, changed clothes just to make sure it wasn't something on me. I spent at least a week thinking there was some real source of the smell, until I started asking others and no one else ever smelled anything. My husband assures me that none of the library books smell like anything.
Tomorrow is one week since starting ibuprofen, and not only does it still smell like smoke, but my eyes, nose, and throat burn when the smell gets stronger, which it does if I just try to ignore it. So, last night I went to bed sniffing an unlit scented votive to mask the phantom smell and avoid the sore throat, etc. I woke up last night and still smelled smoke. Today I smelled smoke in the car and at the store when there was no smoke.
I've been contemplating wearing a car air freshener as a necklace. While on the computer, I've been trying smelling a bar of soap, and if I bring my hand to my nose after holding the soap, it smells like soap and smoke together. So besides looking like a total nutcase, I'm not sure the air freshener idea would work without being literally right under my nose. On top of that, I still have pain in my mouth, etc., and sensitivity to hot cold when eating. I also have had a lot of migraines over the last year and have had them weekly over this summer, but I never noticed any certain smell proceeding them.
My husband had been wondering if my bipolar symptoms could be caused by a brain tumor as a friend of ours recently discovered a tumor was causing her to behave similar to bipolar. I thought he was being silly until this phantom odor started, and I started reading about what could cause it. I thought maybe it was related to the dental work or the medication mix. But everything I've read online says to see a neurologist, because phantosmia can be caused by tumor or seizures or medication.
Unfortunately, my primary care physician just quit his practice last month for a new job. The dentist said he cannot give a referral. I've left a phone message at the psychiatrist to see if I could get a referral there, because getting in to a new primary doctor will take at least a month (I've tried.) If all else fails, the dentist said to visit urgent care.
Does anyone have any common experiences linking these things?
Dear Short Circuited,
Well, I do know that steroids can cause a person to get agressive and manic, so that's probably how come all that happened. And funny smells can happen to people who have migraines. And migraines can come from allergies, which a weak constitution can invite those.
Soooo, since you've taken way too many drugs that haven't helped, and since steroids can have some wild side effects, then whatever medication you're on now, you need to SLOWLY wean yourself off ALL of it, including the seemingly harmless ibuprophen. Some drugs are hard to get off, like the more powerful stuff you've taken like Wellbutrin and Prozac, so you gotta go slow on anything like that, reducing by 1/4 for several days until you feel normal again, then reduce again, and so forth. I realize you may not be on steroids or Prozac or whatever right now, and I also realize that the sequence of events may be contrary to what I'm saying. But just get off all meds, you won't die from anything you've mentioned if you don't take them. Drink plenty of water during this time, to help wash the toxins out of your body. If you get nervous anywhere along the way, it's okay to drink a half glass of good red wine.
To build up your immune system, and thus fight off allergies and other illnesses, which your constitution is ruined now from everything that's happened, then please take B vitamins, drink acidophilus milk with cheerios, and get on a gradually increasing exercise program that gets you to break a sweat, all of these six days a week, go at it full-force for at least a month. Also, you must visit a massage therapist (Swedish is best), do this twice a week for a couple months or until you run out of budget for that, but at least two treatments. Also take a hot soak bubble bath twice a week, by candlelight and when it's quiet, close your eyes part of the time when you're in there, light a little incense to kill that odor you smell sometimes, and RELAX.
Forget all these doctors you've been seeing, and instead, IF you still have migraines a couple months from now, set up an appointment with a doctor who specializes in migraines. Make a list of all the medications you've taken in the last several years, and give it to him, so he doesn't give any of those to you again. Refuse any SSRIs or antidepressants or psychological type medicines, including tranquilizers. Pain killers are fine, they are probably the least problematic medicine you can take, as long as you pay attention to only taking what is prescribed to prevent addiction, but avoid percocet and oxycontin since they are unbelievably addictive. Lyrica helps with nerve pain, you have to increase dose in the first month, sometimes four-fold to reach a plateau, and it does have the side effect of making you off-balance and dizzy, so you can't drive for a couple hours after you take it.
Now, as far as the dental shot being painful, this does happen sometimes. Anytime they squirt medicine to deaden a nerve, there is a risk the nerve will be hit, and the medicine itself can have a bad reaction with people, so just chalk it up to an unlucky dental visit.
Now, I do think there is also a very good possibility that you have an allergy to some stuff, for example, certain times of the year when different plants and such are growing, that's a very common allergy, as are some foods like seafood. Just pay attention to when you feel like you've got the flu or your nose starts running and you get a headache, or your skin can get an itchy rash from poison ivy. Anyhow, simply acknowledge you are having an allergic reaction, and if your nose bothers you, get a plain nasal saline spray (with nothing else in it) to ease any stop-up in your nose, get some plain coughdrops (with nothing in it), and just weather out the allergy, or if it's a skin rash, put calamine lotion on the places until it clears up.
If you notice a commonality to the allergy, great, you can avoid those things. You can even write down everything you were exposed to, close to the day you got the reaction, and figure it out. And anytime you get a runny nose, you are going to get a headache, so could be a few allergies are at the root of your migraines. Which a very good idea if you tend to get allergic, is to build up your immune system by eating well and so forth, the stuff I recommended earlier.
Those would be my ideas. Again, to summarize, no matter the time frames of your problems, I do think the steroids caused your manic episode, I think migraines are creating those odd smells, and I think you should gradually get yourself back to zero on your medications. To build up your resistance to allergies and thus maybe migraines, eat well, relax well, exercise and stay hydrated. And if you have an allergic reaction, unless it completely closes down your respiratory system, just tough it out, and maybe even try to figure it out.
I will do a search periodically for your user name at this neurology forum every week, until you jump back in and let us know how you're doing in, say, a month, if you decide to follow my advice. I would be very interested in finding out what ends up being the final reasons for all the very awful stuff that's been happening to you!
Thank you for responding. I just read your message today. Here is an update from this week.
My dentist referred me to an oral surgeon. The oral surgeon wanted to see me in a month if the trigeminal nerve pain persisted and might prescribe Neurontin, but then his tech said my medical insurance would not cover my visit and to go find someone to refer me to an oral surgeon in my insurance network--and she said by the way, the closest one is about an hour and a half away. The oral surgeon was also going to refer me to a neurologist about the phantom smoke smell, but the tech said my insurance will not accept a referral from him even if it is to a neurologist in my network.
The insurance gods are laughing in my general direction.
My psychiatric nurse said to let her know what happened with the oral surgeon, so I reported to her and my psychiatrist got me in with a neurologist the next day.
The neurologist laughed and said he didn't know why everyone thought he was on House and could diagnose everything. He said he has no idea what it is and is not afraid to admit he is clueless. He said the odor issue could be related to migraines, but probably not since I have had migraines for years without this issue. He doesn't think it is seizures or related to the dental pain and gave me a brief lecture on the mechanisms involved. He doubted tumor, because often there is some other physical issue to indicate tumor, like an obvious seizure, and tumors usually take time to develop.
However, he prepared paperwork for an EEG and MRI to be sure it isn't something serious--if my insurance will approve these tests. I will have to call them Tuesday to see if the insurance approves or if my cash is good enough for them to take.
While the neurologist getting the lab forms, I was thinking about my last visit with my primary doctor about a year ago.
About a year ago, when my primary doctor came into the exam room, I asked him if he smoked. He said no, so I asked him did he just walk through smoke. He was kind of befuddled when I said I could smell smoke, and I just figured his nose wasn't as good as mine. There are other times when I thought I had superior olfactory abilities when no one else could smell smoke, but those occasions were not frequent enough for me to be concerned. When I mentioned this to the neurologist, he seemed a little more serious. Then he said that if it isn't a tumor, he will have no answer, but maybe it could be a Zinc deficiency.
This neurologist is a pain specialist. So, for the pain, the neurologist prescribed Vicodin, and I had to sign a pink slip that in some way is supposed to prevent people from abusing narcotics. I don't know how long the pink paper rule has been out, but it wasn't the last time I got an Rx for Vicodin (for migraines that I never refilled as it didn't seem to help much.) I now have a lifetime supply of Vicodin or perhaps more than a lifetime depending on why I am smelling phantom smoke.
In the meantime, I had been able to get an appointment with a nurse practitioner as a new primary care physician since my former primary doc happens to be doing hospital rounds with my new neurologist. I went from the neurologist to the practitioner thinking I would go ahead and ask that I have zinc tested with whatever routine blood work she ordered.
I was forty minutes early to the practitioner. Upon signing in, I realized I had forgotten to bring my pill bottles and asked the receptionist if I should go home to get them. She said the practitioner required them, so I paid my co-pay, told her I would come right back, and made a run for the bottles.
When I got back, it was ten minutes after my appointment time. The receptionist told me I was late, so I had missed my appointment. I said "But I was forty minutes early." She said now you are late. "But you told me I had to get the bottles." But now you are late. "But I paid." She gave me back my check. "Don't you have a 15 minute rule?" Apparently not. "Then I guess I should have just rescheduled in the first place????" I'm rescheduled for Tuesday morning.
At this point I am hoping it is a tumor so that when I die, my husband can sue the hell out of everybody.
These are my current medications:
Wellbutrin SR 150mg
Motrin as needed in the day (took 600mg after lunch today)
Vicodin 500mg as needed (taking 1 as bedtime)
None of these would be hard for me to quit as far as withdrawal goes, but I went to an allergist and know what my allergies are. You might as well say I'm allergic to air or to breathing. I've stopped taking my allergy medicine before, and I might do okay for a small window in the winter, but spring will again prove to me I really need medicine for my allergies. Fall is just as bad. Mold from rain this week has been giving me sneezing fits and constant congestion even on three allergy meds.
I've already weaned myself down to one dose of Motrin and have only taken one Vicodin pill so far. Those are not a problem to quit other than bearing the nerve pain.
The first problem with quitting Wellbutrin is this: I am taking a suspended release form of Wellbutrin that I cannot cut, so my doctor would have to prescribe a lower dose for me to wean off it.
About three and a half years ago I told my primary care doctor that I thought I needed more Prozac for depression, and he told me I wasn't taking it for depression, so I just quit taking it period. It was only 10mg daily, which should not have been a huge deal. Within a couple of weeks I found myself seriously depressed. I started taking Prozac again, but it didn't seem to help. I didn't go back to my doctor as by that time I was too depressed to take care of myself as I should. Eight months later I switched from depression to hypomania almost overnight. Within six weeks of the switch. I had stopped sleeping and was admitted to the hospital for mania.
As much as I would like to be in denial that I legitimately suffer from bipolar, whether it is a tumor or was instigated by meds, I suspect I am stuck between taking medication for it cycling radically. If it's a tumor, maybe surgery can fix it. If not, even if medication instigated the first symptoms, I wouldn't have developed bipolar symptoms were I not inclined to get them in the first place. Maybe I am afraid to get my hopes up, but if bipolar could be cured by going through detox, I think the medical community would have figured that out by now. However, I will talk to my psychologist about your suggestions when I see him in a couple of weeks if I haven't already found a tumor or anything.
MRI showed no abnormalities. Waiting to hear about EEG. Started Tegretol, which is an antiepileptic that is used for Trigeminal Neuralgia and bipolar. Not up to dose yet. Still having trigeminal pain and smelling phantom smoke.
The EEG was normal, too, but the Tegretol seems to be helping the pain and phantosmia. When the phantom smells started, I was on several meds that had increased seizure risk with Wellbutrin, so I'm taking a lower dose and would like to phase it out if I can just in case it was causing olfactory seizures.
I've just heard about another chronic facial pain that can be mistaken for Trigeminal Neuralgia, called NICO (Neuralgia-Inducing Cavitational Osteonecrosis,) that also responds to anti-seizure medication. NICO can also tie into sinus and migraine problems and become worse from dental work involving epinephrine, which the novocaine shot had in it.
I am trying to get a diagnosis also.
I think I have trigeminal neuralgia .........had oral surgery in 2002.....the surgeon pulled the "eye tooth" and I felt an electrical pain beyond words.........no problems afterwards.......
about 6 months after that I had extensive dental work done.....which on one visit I thought I was having a heart attack after the injection of epinephrine.......
It was hell............so they put on my chart NO eppi ......(big deal)
then.....2003 surgery to remove a pituitary tumor.........transphanoidal surgery (through the nose) ........
A year after that the face pain started.....in the eye......tearing burning ...things got worse ..on and off......cant sleep at night ..pain on head movement.....
went to dentist .........my original dentist left.......his partner ...a crook ......takes out all my caps ..puts in a bridge.........the pain has been almost suicidal...........
I wish i could sue the guy..........
I am so depressed about this pain........stealing my life
I take tylenol only
The dentist wouldnt even give me anything but darvon.and looked at me like im a drug addict or something...........unreal.......since I am the type who wont take anything..........until now , that is..........
Im wondering if this is all from dental work...........
HOw can I ever know
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