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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 12 of 12. This is the beginning of the thread.
Posted by Sharon J. on October 18, 2000, at 9:30:46
Hi. I just discovered this page tonight as I searched the web for some answers to some questions I have, so maybe someone out there has an answer for me. I have been taking Topomax in gradual 25 mg dose increases in one-week to 10-day intervals, aiming toward a therapeutic level of 200 mg (where we would stay for a min. of 6 months) for treatment of lability. I, too, have been losing weight, and in this period of time, have dropped 32 pounds! However, I have a couple of problems that occurred that I want to share that happened to me to see if anyone out there could offer any clues to a mystery. As the dosage of my Topomax was increased, each increase became more and more diffucult to adjust to, and took more and more time before I got to an OK place. (I was feeling dull, lethargic, lack of motivation and kind-of headachey, and these side effects increased intensity and duration at 100mg, 125mg). When I reached the increase from 125 mg to 150 mg, it was just terrible. I felt almost disabled by it, and felt generally sick all over, and was exhausted physcially (but not sleepy), and my head felt wierd. Almost 2 1/2 weeks later, I still had not made the adjustment to 150 mg, and Dr. said to "hang in there". That increase and it's adjustment period seemed endless in comparison to the others, and then a few more days later, something really odd happened: I developed a very sudden onset of hyperosmia (exaggerated and increased sense of smell) coupled with the nastiest case of physical collapse, exhaustion and terrible headache! Within several more days of the hyperosmia onset, I began having panic attacks, GI problems, difficulty staying asleep at night and physical revolt to normal household smells. I vaccillated between severe physical distress from the reaction to "smells" to long periods of being total inert for many, many hours, trying to recover from the extreme physical and emotional manifestations as a result of my hyperosmia! I got really scared and "blamed" Topomax. In the last 10 days, Dr. dropped the dosage of the Topomax (at my insistence) even though he disagreed with me that it caused me to be so sick. Nonetheless, he safely and swiftly reduced the Topomax. It has been 48 hours that I have been Topomax-free, and I am still as sick and miserable as when the hyperosmia started (Oct. 4). I have been to see my physician 3 times since the onset, and he sees "nothing" in my nasal cavities, said I probably have a virus or something, and said he never had a patient present hyperosmia to him before, and admitted he's stumped. I admit I have a really strong aversion to ever taking Topomax again, especially since I am still so sick. I really think this all started as my Topomax dosage increased to 150mg! I need to find out what made me get so sick and caused the hyperosmia. So...anybody out there ever have a wierd reaction to Topomax like this, or can you make 2 + 2 = 4 for me on this one??? Or better yet, any psychopharmacologists or neurologists have any input as to whether there is any remote possibility that Topomax can upset the balance in the brain where the olfactory lobes(?) live? On second thought, how about disputing this scientifically for me so I can get over my intense fear of what Topomax "did" to me altogether? I am grasping for straws. Thanks for any input y'all might have!
Posted by Buffet on October 18, 2000, at 14:33:31
In reply to DOES THIS MAKE SCENTS??, posted by Sharon J. on October 18, 2000, at 9:30:46
I doubt, and very seriously so, the topomax is to blame. I hope you don't take offense to this post, but could you be pregnant? Are you taking birth control or other hormones? Are you OCD?
Posted by Sharon J. on October 18, 2000, at 23:04:08
In reply to Re: DOES THIS MAKE SCENTS??, posted by Buffet on October 18, 2000, at 14:33:31
Nope, I'm not pregnant, taking birth control or hormones. And I am not at all offended at your asking, as I know that something like this can happen with those factors present. And I am not OCD. UPDATE: My physician did some "homework" over the last few days, and today he called me to tell me that he learned bunches more about hyperosmia, and is seeking a neurologist who has had experience with treating this so he can refer me to him/her. Seems as though the physiological responses and the panic attacks, etc., can go with really acute cases of it! And, just like you, he assured me that although it was coincidental that I got sick with this while I was taking Topomax, that one has nothing to do with the other. So, I am headed in the right direction and will get a referral this week now that my physician better understands what is going on. So. That's it. Topomax is not the "bad guy"!
Posted by JohnL on October 19, 2000, at 4:10:51
In reply to DOES THIS MAKE SCENTS??, posted by Sharon J. on October 18, 2000, at 9:30:46
Sharon,
I have not clue as to why you got so sick, or why you are still sick. I think all we can do is give it some time to completely wash out the remainder of the drug and allow the body to readjust. It could be that it made you sick to begin with, and that you are also feeling some sickness in withdrawing the drug too. That's not uncommon. People often feel lousy when starting a drug, and lousy when they try to stop it too. Just a possibility. That fact that it has lingered so long is puzzling. Who knows, maybe you do have a flu virus or something that's just hanging on.There are rare instances when people have extremely adverse effects from drugs of all types. These adverse effects are rare enough that your doctor may never have encountered them before, and they may not even be listed in literature. But that doesn't mean they don't happen.
I know a child...this is a sad story...who has epilepsy. A very common treatment for children is Dilantin. Upon the very first dose she became ill. As dosing continued for a few days, she developed a severe sunburn reaction, which included the insides of her lungs and her eyes! She was in intensive care for almost two months, nearly dead, with little hope for recovery. Thankfully she did pull out of it. But her skin and lungs are scarred, and her eyesight is poor. This was obviously a rare reaction. But it just goes to show that weird unexplained things do and can happen sometimes.
A huge benefit we have over our ancestors is that we have many medications to choose from. If for some reason your doctor feels a mood stabilizer is warranted, it might be wise to try Depakote, Tegretol, and Lithium, perhaps one month each, and then choose your favorite out of those comparisons for a longer commitment. That way there is no doubt and nothing has been overlooked, you'll know for a fact which is best for you.
John
Posted by noa on October 19, 2000, at 16:26:47
In reply to Re: DOES THIS MAKE SCENTS??, posted by JohnL on October 19, 2000, at 4:10:51
I hope these random musings are not inappropriate.
I wonder---I am familiar with the idea of heightened sensory sensitivity during panic, but heightened sense of smell is rarely something I have heard about. Still, it kind of makes sense if a panic attack is a survival-mode reaction, that heightened sensory abilities from a surge of adrenaline would be part of the package, so why not sense of smell?
Perhaps your ancestors came from a physical environment where dangers could be detected by smell in addition to sight and sound?
Posted by Sharon J. on October 19, 2000, at 20:20:25
In reply to Re: DOES THIS MAKE SCENTS??--Random Musings, posted by noa on October 19, 2000, at 16:26:47
Thanks for your comments, John and all. Had an interesting evening last night...went to see my therapist, and asked her to look at this whole "illness" thing with me from a psychological perspective...and we uncovered some eye-opening parallels for me. What we discovered together in the session was that I made three important steps on three different dates which involved my standing up to and confronting three men in my life who I put in "father" or "authority" roles. This is brand new for me to do this as an adult (I am now 44)... Anyway, on those exact dates, I developed first, the terrible headaches and fatigue, then the hyperosmia, and then the panic attacks, respectively. Hmm. My therapist asked me what it was like for me as a child when I was angry at my father, his reaction, my reaction, etc.....and well, he was brutally abusive both physically and emotionally as "punishment" for my standing up to him, showing anger, etc. I learned real quick that in order not to get beat up by my father, I just never got angry at him, or even disagreed. Dad's dead now, but I see now that I continue this pattern with other men. Throughout my life, I have held on tight to any feelings of anger toward men, never letting any out, and, well, I stood up for myself and got really mad at these men recently...only now, unlike when I was a child, there was no beatings or punishment at all...but my whole body and emotional state has been in "emergency" mode in preparation for it...the kid deep inside me is terrified in anticipation of being beat up...Yuk. So, I went home from her office, and at 9:30 pm last night went fast asleep. When I woke up this morning, I was feeling better! Go figure! As the day progressed I really enjoyed a new "freedom" that I haven't had before, and at time of this entry, I am much more centered and comfortable within myself than I can recall before, haven't had any more panic attacks, my head is very comfortable, and my sense of smell is just about back to the way it usually is. Hmm. I am also aware that it is also very interesting that I was having a lot of trouble adjusting to Topomax for a 2 1/2 weeks before taking these three significant steps, the onset of the terribly distressing symptomology, and that I took my last dose of Topomax on Monday morning....it's probably all out of my body by now, and today, Thursday, I feel so much better physically and emotionally. Could be both...but I'm just letting all that go for now, grateful that I am better, and that I can resume my life again. Not where I left of before I got sick on Oct. 4, but in a much different, much better space, ready to move ahead in a new way. Kind of hard to put into words. But I know what I mean. Sigh. It feels so good when it stops...I will just relish in this for now.
By the way...oh, never mind. I'll just that go, too.
Posted by noa on October 19, 2000, at 20:25:37
In reply to Re: DOES THIS MAKE SCENTS?? Insights and parallels, posted by Sharon J. on October 19, 2000, at 20:20:25
Wow, Sharon! That was amazing.
The ways in which mind and body are interrelated is so fascinating, and I think the system can be put off balance by stress, new meds, etc.
But I love how you used this experience to figure some stuff out in therapy.
BTW, I wonder if migraines can have olifactory auras.
Posted by medlib on October 19, 2000, at 21:27:09
In reply to DOES THIS MAKE SCENTS??, posted by Sharon J. on October 18, 2000, at 9:30:46
Sharon--
That's definitely a scary reaction. I doubt that it's due to viral infection; most URI's lead to DEcreased sense of smell. 2 possibilities you might want to investigate further with your doctor (I am NOT one) --
1) Hyperosmia is one of several possible prodromal symptoms (meaning, they precede the onset) of migraine headaches. If your doc is unfamiliar with hyperosmia, you could ask him for referral to a neurologist. If hyperosmia IS linked to migraines, medication that resolves the headache should relieve it, too. (Also, feeling inert, exhausted is a frequent aftermath of severe migraines.)
2) Topomax *has* caused parosmia (disturbed sense of smell) in clinical trials. Rx lit lists its incidence as "infrequent" (btw.1/100 and 1/1000). IMHO, such statistics are susceptible to understatement, and don't matter much anyway, when the 1 is YOU. BTW, Topo can also cause migraines.
The only other things I know that might be remotely relevant are...
1) New olfactory neurons are produced approx. every 60 days. So if, worst case, topo has damaged some nerves, time *might* ameliorate the problem some (although my own hyposmia seems pretty permanent).
2) Olfactory nerves connect to the hippocampus, the hypothalamus, and the amygdala (all brain centers which have a connection to moods).
3) Psych drugs can, over time, cause changes in neuroreceptors which last longer than the presence of those drugs in the body.Hope a bit of this helps. Well wishes---medlib
P.S. I'm trusting that the experts here (and we have many!) will correct any misstatements I may have made. Thanks, all.
>Hi. I just discovered this page tonight as I searched the web for some answers to some questions I have, so maybe someone out there has an answer for me. I have been taking Topomax in gradual 25 mg dose increases in one-week to 10-day intervals, aiming toward a therapeutic level of 200 mg (where we would stay for a min. of 6 months) for treatment of lability. I, too, have been losing weight, and in this period of time, have dropped 32 pounds! However, I have a couple of problems that occurred that I want to share that happened to me to see if anyone out there could offer any clues to a mystery. As the dosage of my Topomax was increased, each increase became more and more diffucult to adjust to, and took more and more time before I got to an OK place. (I was feeling dull, lethargic, lack of motivation and kind-of headachey, and these side effects increased intensity and duration at 100mg, 125mg). When I reached the increase from 125 mg to 150 mg, it was just terrible. I felt almost disabled by it, and felt generally sick all over, and was exhausted physcially (but not sleepy), and my head felt wierd. Almost 2 1/2 weeks later, I still had not made the adjustment to 150 mg, and Dr. said to "hang in there". That increase and it's adjustment period seemed endless in comparison to the others, and then a few more days later, something really odd happened: I developed a very sudden onset of hyperosmia (exaggerated and increased sense of smell) coupled with the nastiest case of physical collapse, exhaustion and terrible headache! Within several more days of the hyperosmia onset, I began having panic attacks, GI problems, difficulty staying asleep at night and physical revolt to normal household smells. I vaccillated between severe physical distress from the reaction to "smells" to long periods of being total inert for many, many hours, trying to recover from the extreme physical and emotional manifestations as a result of my hyperosmia! I got really scared and "blamed" Topomax. In the last 10 days, Dr. dropped the dosage of the Topomax (at my insistence) even though he disagreed with me that it caused me to be so sick. Nonetheless, he safely and swiftly reduced the Topomax. It has been 48 hours that I have been Topomax-free, and I am still as sick and miserable as when the hyperosmia started (Oct. 4). I have been to see my physician 3 times since the onset, and he sees "nothing" in my nasal cavities, said I probably have a virus or something, and said he never had a patient present hyperosmia to him before, and admitted he's stumped. I admit I have a really strong aversion to ever taking Topomax again, especially since I am still so sick. I really think this all started as my Topomax dosage increased to 150mg! I need to find out what made me get so sick and caused the hyperosmia. So...anybody out there ever have a wierd reaction to Topomax like this, or can you make 2 + 2 = 4 for me on this one??? Or better yet, any psychopharmacologists or neurologists have any input as to whether there is any remote possibility that Topomax can upset the balance in the brain where the olfactory lobes(?) live? On second thought, how about disputing this scientifically for me so I can get over my intense fear of what Topomax "did" to me altogether? I am grasping for straws. Thanks for any input y'all might have!
Posted by Sharon J. on October 19, 2000, at 23:11:09
In reply to Re: DOES THIS MAKE SCENTS?? » Sharon J., posted by medlib on October 19, 2000, at 21:27:09
Boy, there is a very interesting mix here.... medications, possible virus, awareness of big-time hurts and fears from my past...and now all this new info about Topomax shown as causing *parosmia* and the brain/olfactory nerve interaction with mood and emotion... I didn't know this stuff! Knowledge about my brain, my body, medications and how they interact is very, very important to me, as is my continuing to work to gain insight into myself and changing my old patterns of doing to new ones. That's all I know is I feel better today, and it would really be great to learn anything else I can that anyone is willing offer so I can do whatever it takes to make sure that I NEVER have an experience like this one again. To: "medlib": Can you please tell me where I can find that info in print that you listed about Topomax and parosmia? (I feel really angry that my care givers kept saying that none of this has to do with Topomax!) Knowledge empowers me, and what I don't know, just MIGHT hurt me!!!
Oops. Gotta slow down a bit. Breathe....
Thanks so much for all that each of you has offered through your messages. And, if anyone else wants to add their two "scents" in (sorry for the pun) I welcome it.
Posted by medlib on October 20, 2000, at 2:04:23
In reply to Re: DOES THIS MAKE SCENTS?? » medlib, posted by Sharon J. on October 19, 2000, at 23:11:09
Sharon--
First, drug companies will never admit that any symptom patients have while taking their drug is *caused* by that drug. Second, almost any physical symptom (Sx) you can think of has happened to someone while taking a given drug. Drug co.s are required to report it all; that's why all the tables and estimates of incidence. The URL below will take you directly to the "Side Effects and Adverse Reactions" section of RxList's report on topiramate, the generic name of Topamax. Scroll down (past all the tables) to the "Adverse events occuring during all clinical trials" section and you will find parosmia listed under "Special Senses" (near the bottom). Sorry it wouldn't hyperlink--you'll have to copy/paste.
http://www.rxlist.com/cgi/generic2/topiram_ad.htm
RxList is a good site for drug reference. The complete report on a drug is found under its generic name, and it is organized into sections (tabs at the top of the page under RxList name). The search page for drugs is at:
www.rxlist.com/interact.htmPersonally, I think it's far more likely that the hyperosmia you experienced was part of a migraine-like syndrome, possibly triggered by extreme stress. So your docs are quite likely right--Topamax probably is not involved. The fact that your hyperosmia resolved as suddenly as it occurred certainly suggests that. (I hadn't seen your follow-up post before I posted.)
As anyone here can tell you, taking psych meds is a crap shoot that requires great patience, tolerance, and willingness to experiment with oneself. We wouldn't do it if the alternative wasn't unendurable. There are no guaranties, and this site's motto is YMMV--Your Mileage May Vary.
More about migraine headaches and hyperosmia can be found at:
http://www.continuingeducation.com/pharmacy/migraine/classification.htmlMore about the olfactory system and the brain can be found at:
http://faculty.washington.edu/chudler/chems.htmlWell wishes--medlib
> Boy, there is a very interesting mix here.... medications, possible virus, awareness of big-time hurts and fears from my past...and now all this new info about Topomax shown as causing *parosmia* and the brain/olfactory nerve interaction with mood and emotion... I didn't know this stuff! Knowledge about my brain, my body, medications and how they interact is very, very important to me, as is my continuing to work to gain insight into myself and changing my old patterns of doing to new ones. That's all I know is I feel better today, and it would really be great to learn anything else I can that anyone is willing offer so I can do whatever it takes to make sure that I NEVER have an experience like this one again. To: "medlib": Can you please tell me where I can find that info in print that you listed about Topomax and parosmia? (I feel really angry that my care givers kept saying that none of this has to do with Topomax!) Knowledge empowers me, and what I don't know, just MIGHT hurt me!!!
>
> Oops. Gotta slow down a bit. Breathe....
>
> Thanks so much for all that each of you has offered through your messages. And, if anyone else wants to add their two "scents" in (sorry for the pun) I welcome it.
Posted by Sharon J. on October 20, 2000, at 10:55:55
In reply to Re: DOES THIS MAKE SCENTS??, posted by medlib on October 20, 2000, at 2:04:23
Thanks, Medlib. Mind and body work so mysteriously to me.
Well, today is Friday, and while I had a really good day yesterday, and went to sleep with a sense of "thank God that's over"...I woke up sick again today. All the symptoms are back. I feel just terrible -- YUK! So, I decided to try another approach rather than giving in to this (collapsing) or screaming bloody murder at my docs. I decided I'd call my therapist. Told her how much better Thursday was after working with her the previous night, and that now I was really sick again. I told her I didn't understand, and what could this be, yadda, yadda, and she stopped me short and told me get a pen and paper. She gave the following "Rx": 1.) Don't try to figure it out! Do not dwell on it. Just "be" with it. 2.) Call my physician's office and leave word with his nurse of my symptoms as a means to keep him informed of what I am experiencing physically... not to create an emergency. 3.) Treat any symptoms I have (such as if I have diarrhea all day, take something for that, or if I have a headache, do some meditation, take some tylenol) and keep in mind that while all this is very distressing, it is NOT dangerous. 4.) Do what I like that is enjoyable today -- Even if if means just taking a bubble bath, reading, taking a walk...whatever I can do given the situation and symptoms at hand, make time for me. 4.) And finally, she told me to go rent and watch the following video: Indiana Jones and the Holy Grail. She said that there was some stuff in there that has to do with following clues, and seeking the "truth" or something. Hmm.
I am following her Rx today. Never saw any Indiana Jones movies before. The bubble bath was nice. Maybe I'll sit on my patio in the sun before driving to the video store. Hmm. I'll do whatever I can to make this the best possible day, no matter how terrible I feel.
P.S. Thanks for the URL's...I'll check them out another time. Today, I am just going to "be".
Posted by Sharon J. on October 21, 2000, at 23:12:35
In reply to Re: DOES THIS MAKE SCENTS?? » medlib, posted by Sharon J. on October 20, 2000, at 10:55:55
Dear Everyone:
It is Saturday night. My last dose of Topomax was on last Monday morning. I have some things to share.
Although I had a short recurrence of some symptoms yesterday (Friday), (smells were a little out-of-whack in a.m., mild wierdness in my head and dullness upon waking, and I felt run-down until early evening), I had no panic attacks at all, and actually got much more cognitive stuff done than I had been able to do in weeks. (I opened 2 1/2 weeks worth of mail and wrote checks, organized receipts, and started putting the house back together again.) I was scared when I first woke up yesterday that I was "sick" again, but it never developed into anything near the terrible state I have been in since Oct. 3.
Today is Saturday, and I can say that, over the last three days, I notice a remarkable change in several areas: The quality of my sleep each night is better and better, and I am waking feeling rested. Also, I am not having "fitful" dreams any more. I am not so thirsty. My head feels fine. My "smell" is OK, too. It wasn't until today that I am aware of how much more at ease I am with myself -- so much more comfortable and calm than I have been in a long time. In looking back, I now see that I have been horribly anxious I have been, and today, the anxiety is gone. In addition, over the last two days, I have noticed that I have progressively become so much more amiable, wanting to be with people again, and have enjoyed simple things, like TV and reading again, too. Stuff doesn't seem "hard" any more. Today, I found that my appetite is better, I felt hungry, and I enjoyed cooking for myself for the first time in a long, long time. And I have a sense of overall well-being that I have missed for quite awhile. I even caught myself humming to myself today, too... something I do when I am content.
Today I went to a meeting at church, too. (I had not been there for almost 10 days) It was a lively discussion group, and I really enjoyed it. Afterwards, I got feedback from so many people that I looked so much better and that it was great to have "Sharon" back again. Compliments and stuff. I was a little surprised at all their enthusiasm toward me, and I didn't know exactly what to make of it. So, I asked two people to whom I feel close at the end of the meeting if they would stay behind and talk, and I asked them to be more specific in what everyone meant. They told me frankly that I had gotten so hostile and rude the last several weeks or more, and said that I had been so unreasonable, making a gripe about everyone and anything, and they were really repelled by my "horrible" aggressive attitude -- prior to today. They said that I today looked much more rested, that my face seemed "soft" and my eyes were sparkling again. They said that I was so much more cooperative today, and that I seemed like "my old self" again. They hugged me and said that "thier prayers had been answered."
So. Medication? Side-Effects? Unresolved childhood conflict? Virus? Who can be sure?
I just know that I am so much better. And I want to do anything that I possibly can to make sure that I NEVER have something like this hell that I have been in happen again.
Sharon
This is the end of the thread.
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