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Dr. Bob is Robert Hsiung, MD,
[email protected]Shown: posts 1 to 21 of 21. This is the beginning of the thread.
Posted by chloe on June 26, 2003, at 18:56:30
Hi
Does anyone out there get this searing, burn feeling in their scalp and skin when they get on a regular dose of a mood stabilizer? I had to get off Depakote, neurontin, tegretol, lamictal, etc, etc because this burning would occur. And over time the pain gets so bad, that is all I focus on.Well, I just switched to Klonopin from Valium a week ago because I was having alot of mixed stated, rages, etc (I am bp2, rapid cycler, managing on Li as a stablizer). I really like Klonopin and think it's superior to valium for mixed states and in general. But over the last few days, the scalp thing has come back! I can't be the only one experiencing this...and what is it? Why can't I take a med that calms and evens me out without physical pain? I hope I don't have to go back to the Valium, becuase it had stopped working.
If anyone has ANY thoughts I would appreciate it.
Chloe
Posted by Darwin on June 27, 2003, at 23:50:07
In reply to Mood stabilizers (klonopin?) and SIDE EFFECTS!, posted by chloe on June 26, 2003, at 18:56:30
Hi Chloe,
Are you the same Chloe who underwent intensive ECT therapy about a year ago? She also suffered from scalp pain. If so, please tell us how you've been and your feelings about the ECT therapy you received..
Darwin
Posted by chloe on June 28, 2003, at 20:09:50
In reply to Chloe ?, posted by Darwin on June 27, 2003, at 23:50:07
Hi Darwin,
I am almost too depressed and suicidal to write this but I ll try.I am the same Chloe, and a year ago last spring, I was having such severe scalp burn from trying so many different mood stabilizers that I got off almost all my meds and had ECT. It worked wonders in the beginning. I had about four months of no cycling, no suicidal ideation, no anhedonia. I really felt cured, a miracle treatment!!!...But maintenance ECT was not very effective, ie ECT once or twice a month. So I stopped ECT. Within a few months the distorted thinking and anhedonia came back. I just struggled living with it. But it seems as the bright days of summer have arrived, I am miserable and very suicidal again.
I was offered ECT 2 times a month again. But I don't want to do that. I am just now getting a grip on my memory. I have had to relearn alot of words, telephone numbers, pins (I lost alot of atm cards trying to remember pin numbers). But if I am so messed up and depressed and want to off myself, why should I care about my memory?...Well, because I may feel better in the future and be really uncomfortable when I don't recognize the face or name of someone greeting me, for example.Not everyone has such memory loss. In fact, I think it's on the rarer side. Most people tend to have temporary short term memory that gradually gets better over time. Mine did not get better over time.
Unfortunately, most every med or treatment has a time limit with me. Treatments or meds tend to work for a few months, then side effects or lack of response starts to happen and I slide back into suicidality and mixed states. I wish I knew what to do now. Two great meds were added to the Li, clonazapam and seroquel, but they give me that awful scalp burning. So I can only use a fraction of what I need to quell these nasty destructive thoughts. I feel so helpless and tired. How in the world can I get fixed? I have tried most everything, LITERALLY, and I am still in a dangerous rut.
Wow, I can't believe you remembered me from last year. I hope you are doing ok. Are you considering ECT?Chloe
Posted by McPac on June 29, 2003, at 1:34:05
In reply to Mood stabilizers (klonopin?) and SIDE EFFECTS!, posted by chloe on June 26, 2003, at 18:56:30
Chloe, I've read your posts and hear your pain. I have no idea why you're getting that burning feeling in your scalp.....was it possibly from the ECT? What does your doc say? Have you tried fish oil for some mood stabilization? Take care!!!
Posted by fallsfall on June 29, 2003, at 9:58:38
In reply to Mood stabilizers (klonopin?) and SIDE EFFECTS!, posted by chloe on June 26, 2003, at 18:56:30
Strattera can be effective for depression and it seems to be "different" from other drugs. You might ask your pdoc about it. Good luck.
Posted by Ritch on June 29, 2003, at 11:14:12
In reply to Mood stabilizers (klonopin?) and SIDE EFFECTS!, posted by chloe on June 26, 2003, at 18:56:30
> Hi
> Does anyone out there get this searing, burn feeling in their scalp and skin when they get on a regular dose of a mood stabilizer? I had to get off Depakote, neurontin, tegretol, lamictal, etc, etc because this burning would occur. And over time the pain gets so bad, that is all I focus on.
>
> Well, I just switched to Klonopin from Valium a week ago because I was having alot of mixed stated, rages, etc (I am bp2, rapid cycler, managing on Li as a stablizer). I really like Klonopin and think it's superior to valium for mixed states and in general. But over the last few days, the scalp thing has come back! I can't be the only one experiencing this...and what is it? Why can't I take a med that calms and evens me out without physical pain? I hope I don't have to go back to the Valium, becuase it had stopped working.
> If anyone has ANY thoughts I would appreciate it.
> ChloeChloe, sorry you are having this hassle yet again. I never thought about this before, but could the "mixed-states" thing involve some neurological problem that also triggers the scalp stuff? I know it is a chicken or egg question, but it really sounds like some neuropathy that might be secondary to the mood instability (is all of it interrelated?). I just added some Keppra (this makes the 2nd time), and it seems to be helping chill me out. I was getting so wired and sleep-deprived AND experiencing increased body stiffness and pain all over. Generally, it is the usual somatic symptoms associated with my summertime depression. I'm getting an analgesic effect this time that's helping... I wonder if opiates (Buprenex?) might be helpful for you...?? You might ask your doc about this idea. Hope things get better-I know you don't want to go back on Valium...---Mitch
Posted by Darwin on June 29, 2003, at 15:40:31
In reply to Re: Chloe ?---Yes, the same » Darwin, posted by chloe on June 28, 2003, at 20:09:50
Hi Chloe,
I did some amateur research concerning your scalp pain. You are not alone. Dermatologists refer to your scalp pain as "Burning Scalp Syndrome" and it is sometimes associated with various skin conditions and/or hair loss. Too much "Substance P" may be a cause (Substance P is also implicated in various affective disorders). Some studies have suggested that Lithium increases Substance P and this would explain the increased burning you experience while on lithium. Low doses of antidepressants such as amitriptyline and doxepin may decrease Substance P levels and are among the most effective treatments for "Burning Scalp Syndome". Perhaps you should consider taking amitriptyline or doxepin again.
There is a lot more information on your condition available on the internet. When you are feeling better, I suggest you go to 'google.com' and do a search on "Burning Scalp".
You wrote:
> Wow, I can't believe you remembered me from last year. I hope you are doing ok. Are you considering ECT?
>I remembered you because you write beautifully about your feelings and you impressed me as a warm sensitive and caring person. I do have a lousy memory but I won't soon forget you.
My problem is life-long dysthymia but I'm doing fairly well now, almost normal. I'm not considering ECT for myself. I was just wondering how you were doing.
Darwin
Posted by chloe on June 29, 2003, at 20:43:53
In reply to Chloe Needs HELP People!!! Anybody?, posted by McPac on June 29, 2003, at 1:34:05
> Chloe, I've read your posts and hear your pain. I have no idea why you're getting that burning feeling in your scalp.....was it possibly from the ECT? What does your doc say? Have you tried fish oil for some mood stabilization? Take care!!!
McPac,
Thanks so much for putting the word out. I get so distressed when the meds I need give me such awful scalp pain. I had the pain before I decided to start ECT. It was one of the main reasons to try ECT, b/c I could taper off most of my meds and get rid of the scalp pain.
I have tried fish oil. But have chosen flaxseed oil since it is so much more pallitable. I think it has similar properties???
I hope you are doing ok--and thanks again for being so kind and caring
Chloe
Posted by chloe on June 29, 2003, at 20:46:43
In reply to Re: Mood stabilizers (klonopin?) and SIDE EFFECTS! » chloe, posted by fallsfall on June 29, 2003, at 9:58:38
Straterra, I haven't researched that one. Thanks for the suggestion.
Chloe
Posted by chloe on June 29, 2003, at 21:30:27
In reply to Re: Mood stabilizers (klonopin?) and SIDE EFFECTS! » chloe, posted by Ritch on June 29, 2003, at 11:14:12
> Chloe, sorry you are having this hassle yet again. I never thought about this before, but could the "mixed-states" thing involve some neurological problem that also triggers the scalp stuff? I know it is a chicken or egg question, but it really sounds like some neuropathy that might be secondary to the mood instability (is all of it interrelated?). I just added some Keppra (this makes the 2nd time), and it seems to be helping chill me out. I was getting so wired and sleep-deprived AND experiencing increased body stiffness and pain all over. Generally, it is the usual somatic symptoms associated with my summertime depression. I'm getting an analgesic effect this time that's helping... I wonder if opiates (Buprenex?) might be helpful for you...?? You might ask your doc about this idea. Hope things get better-I know you don't want to go back on Valium...---MitchHi Mitch,
Wow, I never thought of the mixed states and the pain having some neurological component. But it seems once the pain starts, it is there until I taper off my meds-not really mood related...Right now, I think it is the seroquel causing it. Because I have needed it more prn, hence increasing the amount I take, then the pain gets worse. But I really need the seroquel now. My thinking can get really negative and dangerous. I get so fascinated about how I could passively get killed, for example...Eariler, I was so glad I was going to the airport next month because there are men with guns there now. I kept thinking of ways I could provoke an armed guard into shooting me. Really messed up thinking. But twenty minutes after a seroquel, I feel clearer and light and wonder what in the hell was I thinking...I tried neurotin last time for the scalp pain. It didn't do much as a stabilizer or for the pain. If anything, I think it made it worse. I am trying to keep the amount of meds to a minimum. It seems my smallish body doesn't handle alot of meds at one time.
I am glad you are getting some relief from Keppra. You were sounding stressed from not sleeping well and just feeling edgy. How nice you got some anelgesic effect. Phew!
I have no idea what my pdoc would think of a narcotic. Is it ever prescribed for daily use? Or is this just for a short trial? In theory, it sounds great. That class of drug also really tends to improve mood. I am not sure I could deal with the idea though! it took me years to accept benzo's not just on a prn basis because of the stigma involved! I am over that now, and I pleased with the clonazapam. It puts a cap on me, so I don't go over the top or get too racy. The valium was useless for stabilizing or holding off hypomanic stuff
Thanks alot Mitch
Posted by Emme on June 29, 2003, at 21:31:40
In reply to Mood stabilizers (klonopin?) and SIDE EFFECTS!, posted by chloe on June 26, 2003, at 18:56:30
Hi Chloe,
Have you tried Abilify? It's not a mood stabilizer, but it has helped me some with depression. I have a friend who is bipolar I and last I heard they were thinking about trying her with a combo of seroquel and abilify. We'll see how that turns out.
I'm sorry you're so miserable. Hope you feel better soon.Emme
Posted by chloe on June 29, 2003, at 21:48:34
In reply to Chloe ? » chloe, posted by Darwin on June 29, 2003, at 15:40:31
> Hi Chloe,
>
> I did some amateur research concerning your scalp pain. You are not alone. Dermatologists refer to your scalp pain as "Burning Scalp Syndrome" and it is sometimes associated with various skin conditions and/or hair loss. Too much "Substance P" may be a cause (Substance P is also implicated in various affective disorders). Some studies have suggested that Lithium increases Substance P and this would explain the increased burning you experience while on lithium. Low doses of antidepressants such as amitriptyline and doxepin may decrease Substance P levels and are among the most effective treatments for "Burning Scalp Syndome". Perhaps you should consider taking amitriptyline or doxepin again.
>
> There is a lot more information on your condition available on the internet. When you are feeling better, I suggest you go to 'google.com' and do a search on "Burning Scalp".Hi
Thanks for looking into this. I will have to do the same. Perhaps there has been some improvement and advancement from last year. I went to the dermotologist last year, and came home with a peanut oil, a shampoo, and a liquid for my scalp. They were ALL horrible and made my hair fall out more and my scalp feel like it was on fire more. I had to put the peanut oil all over my hair and scalp with a plastic shower cap and try to sleep the night for two weeks. Yuck, and never again-especially since it made it worse! I do take 45 mgs of doxepin...I could bump that up to fifty. A little goes a long way with me, I might give that a shot.
>
> You wrote:
>
> > Wow, I can't believe you remembered me from last year. I hope you are doing ok. Are you considering ECT?
> >
>
> I remembered you because you write beautifully about your feelings and you impressed me as a warm sensitive and caring person. I do have a lousy memory but I won't soon forget you.
>
> My problem is life-long dysthymia but I'm doing fairly well now, almost normal. I'm not considering ECT for myself. I was just wondering how you were doing.
>
> Darwin
>Darwin, thank you for what you wrote about me, and how you remembered me. That was so kind, you lifted my spirits. I am so sorry you suffer from dysthymia, but I am glad you feel "almost normal" and can share your thoughts and experiences with others.
Many thanks,
Chloe
Posted by chloe on June 29, 2003, at 21:57:25
In reply to Re: Mood stabilizers (klonopin?) and SIDE EFFECTS! » chloe, posted by Emme on June 29, 2003, at 21:31:40
> Hi Chloe,
>
> Have you tried Abilify? It's not a mood stabilizer, but it has helped me some with depression. I have a friend who is bipolar I and last I heard they were thinking about trying her with a combo of seroquel and abilify. We'll see how that turns out.
> I'm sorry you're so miserable. Hope you feel better soon.
>
Hi Emme,
I am glad Abilify is helping your depression. I anecdotely, have not heard such good things about the drug. I heard it caused insomnia and some problems with agitation, stiffness, etc. How are you doing side effect wise? Is it sedating at all? Does it affect your sleep? Have you ever tried seroquel? Lastly, what is the benefit of seroquel and abilify together? Haven't heard of two ap's before...
Sorry for all the questions. It just so new...
Thanks so much
Chloe
> Emme
>
Posted by Emme on June 30, 2003, at 8:48:40
In reply to Re: Mood stabilizers (klonopin?) and SIDE EFFECTS! » Emme, posted by chloe on June 29, 2003, at 21:57:25
> > Hi Chloe,
> >
> > Have you tried Abilify? It's not a mood stabilizer, but it has helped me some with depression. I have a friend who is bipolar I and last I heard they were thinking about trying her with a combo of seroquel and abilify. We'll see how that turns out.
> > I'm sorry you're so miserable. Hope you feel better soon.
> >
>
>
> Hi Emme,
> I am glad Abilify is helping your depression. I anecdotely, have not heard such good things about the drug. I heard it caused insomnia and some problems with agitation, stiffness, etc. How are you doing side effect wise? Is it sedating at all? Does it affect your sleep? Have you ever tried seroquel? Lastly, what is the benefit of seroquel and abilify together? Haven't heard of two ap's before...Hi Chloe,
I originally stopped Abilify because the side effects were bothering me and it seemed to have petered out in effectiveness. It does interfere with sleep and caused some restlessness and difficulty concentrating for me. I think some of that can be managed with careful dosing. My pdoc says she has one patient who takes 2 mg every other day and that it helps her a lot.
Lately I've added it back in and I think it's helping the depression again - I think it will end up being something I use sporadically to help over rough spots. I only use about 2-3 mg.
I do take seroquel at the moment. A speck of it (6 mg or less). Originally my pdoc prescribed it to help with sleep (from Lamictal-induced insomnia) and she said it could provide additional mood stabilization. I seem to tolerate it without too much trouble (and that's saying a lot!). If I take more than I really need, it leaves me sedated in the morning. But a tiny amount *really* helps settle me down if I'm too restless or agitated. So maybe it would help you with agitation/hypomania. It packs a bigger punch than clonazepam.
I think these two could be complementary based on my personal experience. I'm behind on learning the pharmacologic mechanisms of the newer APs, so I can't help you with the pharmacologicl reasoning behind combining them. But I'm sure someone here can. At the moment I'm taking both, along with other things. I'll be waiting to hear what my friend thinks of the combo of just those two and if she stays with it.
Emme
Posted by Ritch on June 30, 2003, at 10:04:20
In reply to Re: Mood stabilizers (klonopin?) and SIDE EFFECTS! » Ritch, posted by chloe on June 29, 2003, at 21:30:27
> I have no idea what my pdoc would think of a narcotic. Is it ever prescribed for daily use? Or is this just for a short trial? In theory, it sounds great. That class of drug also really tends to improve mood. I am not sure I could deal with the idea though! it took me years to accept benzo's not just on a prn basis because of the stigma involved! I am over that now, and I pleased with the clonazapam. It puts a cap on me, so I don't go over the top or get too racy. The valium was useless for stabilizing or holding off hypomanic stuff
> Thanks alot Mitch
>
>
Chloe, you've gotten some good suggestions from Darwin and Emme about tricyclics and Abilify. FWIW, I was on 150mg of doxepin during one summertime episode and it didn't make me hypomanic (at that time anyhow). How did your trials of Tegretol or Trileptal go? Just curious, they use those for neuropathic pain quite a bit. Opioids-narcotics? I've never been on them for bipolar before, but I've heard some anecdotal stories here (some good, some bad). Whew-I just hope you can get in to see your endocrinologist soon-you might mention the substance P thing during the visit (associated with your scalp issues)-he might have some way of dealing with that--who knows?--take care--Mitch
Posted by chloe on June 30, 2003, at 11:05:54
In reply to Re: Mood stabilizers (klonopin?) and SIDE EFFECTS! » chloe, posted by Emme on June 30, 2003, at 8:48:40
Posted by chloe on June 30, 2003, at 11:39:47
In reply to Re: Mood stabilizers (klonopin?) and SIDE EFFECTS! » chloe, posted by Ritch on June 30, 2003, at 10:04:20
> Chloe, you've gotten some good suggestions from Darwin and Emme about tricyclics and Abilify. FWIW, I was on 150mg of doxepin during one summertime episode and it didn't make me hypomanic (at that time anyhow). How did your trials of Tegretol or Trileptal go? Just curious, they use those for neuropathic pain quite a bit. Opioids-narcotics? I've never been on them for bipolar before, but I've heard some anecdotal stories here (some good, some bad). Whew-I just hope you can get in to see your endocrinologist soon-you might mention the substance P thing during the visit (associated with your scalp issues)-he might have some way of dealing with that--who knows?--take care--Mitch
Hi Mitch,
I tried going up on Doxepin ten mgs last night. I don't know if it's connected, but I have tons of nervous energy and am having trouble staying still. BUT, my scalp seems a tiny bit better. It's just burning at the crown now which is a relief. Because I can put an ice pack on it and numb it out for a while. I guess this edgy, anxious feeling I could treat with Clonaz. if I have to...I will try to just deal with it. Maybe it will go away over time?As for tegretol, that was the one I switched to after depakote gave me scalp pain. I could never take very much of it, only pieces of the chewable tabs. It made me very unsteady on my feet/visual distortions and headachy. I also felt nauseated and overall crumby. Emotionally and physically. A real blah unfocused feeling.
Trileptal from almost the first pill really exacerbate the scalp pain and gave me constant heartburn, too. I tried to stick with it. But that is when I think I added or was moved to neurontin. Unfortunately that was not helpful to me either. Though it was mildly calming which I did like.I keep calling about the endo appt. Thanks for reminding me! The office swears they are going to call me with an appointment and they just don't. I have my pdoc secretary on it now.
Thanks for the tip on doxepin. You and Darwin maybe in on to something. Because the severe pain can make me crash in to a deep depression...I think there are no more options because I can't even take meds that work. But there are always options. I just have to ask the right people--You guys!
Hope the Keppra is still helping.
Chloe
Posted by Ritch on June 30, 2003, at 13:54:22
In reply to Re: Mood stabilizers (klonopin?) and SIDE EFFECTS! » Ritch, posted by chloe on June 30, 2003, at 11:39:47
Posted by McPac on June 30, 2003, at 23:03:19
In reply to Re: Chloe Needs HELP People!!! Anybody? » McPac, posted by chloe on June 29, 2003, at 20:43:53
Hope you got some good ideas from various people Chloe....Take Care!!!!
Posted by jemma on July 2, 2003, at 11:41:10
In reply to Mood stabilizers (klonopin?) and SIDE EFFECTS!, posted by chloe on June 26, 2003, at 18:56:30
Hi Chloe -I wonder if your reaction to anticonvulsants has something to do with experiencing an atypical cerebral vasodilation effect. Topamax does list this as an occasional side effect. If that is the case, then perhaps you could add something that causes vasoconstriction, like a stimulant. Maybe you could try for one day drinking lots of strong coffee, and see if the pain goes away.
Good luck. It must be very frustrating to know that you need a stabilizer but can't tolerate one.
- Jemma
> Hi
> Does anyone out there get this searing, burn feeling in their scalp and skin when they get on a regular dose of a mood stabilizer? I had to get off Depakote, neurontin, tegretol, lamictal, etc, etc because this burning would occur. And over time the pain gets so bad, that is all I focus on.
>
> Well, I just switched to Klonopin from Valium a week ago because I was having alot of mixed stated, rages, etc (I am bp2, rapid cycler, managing on Li as a stablizer). I really like Klonopin and think it's superior to valium for mixed states and in general. But over the last few days, the scalp thing has come back! I can't be the only one experiencing this...and what is it? Why can't I take a med that calms and evens me out without physical pain? I hope I don't have to go back to the Valium, becuase it had stopped working.
> If anyone has ANY thoughts I would appreciate it.
> Chloe
Posted by chloe on July 2, 2003, at 13:56:04
In reply to Re: Mood stabilizers (klonopin?) and SIDE EFFECTS! » chloe, posted by jemma on July 2, 2003, at 11:41:10
>
> Hi Chloe -
>
> I wonder if your reaction to anticonvulsants has something to do with experiencing an atypical cerebral vasodilation effect. Topamax does list this as an occasional side effect. If that is the case, then perhaps you could add something that causes vasoconstriction, like a stimulant. Maybe you could try for one day drinking lots of strong coffee, and see if the pain goes away.Jemma,
That is interesting...There are so many "weird" side effects associated with these meds. I am thinking it's the seroquel that is causing my burning feeling now. I read that it can cause inflammation of the skin. My scalp and skin all feel like I have a bad sunburn. But it can be more intense at sometimes than others. I think when I get agitated and sweat, the pain if more perceptable. But the Seroquel is helping so much, I don't want to ditch it. So I will keep looking for answers and tolerate it for now.> Good luck. It must be very frustrating to know that you need a stabilizer but can't tolerate one.
You couldn't be more right. Thanks so much for the imput, and I will look into the atypical cerebral dilation stuff.
Many thanks,
Chloe
> - Jemma
>
>
This is the end of the thread.
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