Hot Flash Forum!
Comments
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http://community.breastcancer.org/forum/91/topic/747016?page=24#idx_717
this is a post mastectomy pain site --------they are using neurontin/gabepentin-----------I felt some might want to see if any of this dovetailed
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Ok Sas, I'll give it a try!0
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Thank you so much for this link! Great info! I have been having severe hot flashes and other SEs for 4 years - since diagnosis & dropping HRT. I'm sorry to hear so many of you are feeling as lousy as I am but it does give me some comfort. The only thing I have found that actually helped was a bilateral stellate ganglion block sometimes used for pain & for people who perspire too much. Some studies have been done on this procedure for hot flashes & I found a pain Dr who would do it. It helped the amount of sweat, dehydration was a problem. I stopped taking Arimidex a few months ago. What is the value of preventing BC recurrence if I shoot myself? Still having hot flashes but many of the other SEs are better.
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Welcome Sleepless glad you found us!0
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Up date on Clonidine and my hotflashes. I think my last post was a day when I had had only one hot flash. Well, that was one day and although I have had other days like that, I'm still flashing. I do feel that there is minimal impovement with the Clonidine, and since it's supposidly good for other things (like anxiety and headaches, not to mention BP), I figure that I might as well continue taking it since it doesn't seem to be doing any harm. Bottom line for me is that if my hotflashes stopped all together then I'd wonder if the Tamoxifen was still working how warped is that??
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Mary Jo
True...things could definitely be worse. Thing is, for me personally, I feel like it's an all or nothing kind of deal. I feel like if I can't take something that will eliminate the hot flashes all together (I know, you're all laughing right now because there probably is no such miracle drug!) then I feel like I just don't want any more drugs. Sometimes, I feel like if we mess with mother nature too much, we could be asking for trouble. Scares me...and not sure it's worth the risk for me.0 -
Mouse, I agree, this whole Rx scene is a delicate dance. I have had terrific (knock on wood!) luck with my flashes after switching to the beta-blocker Coreg. (I take a beta blocker for heart arrhythmia and elevated BP.)
I was on another Rx but it interacted with Tamox so we were trying to find a suitable replacement when we hit on the Coreg. It works for my BP, which is great, but even more important, it has reduced my flashes by 90%. (And I no longer feel anxious!!) My DH (a pharmacist) said the drug works by relaxing the blood vessels. So I guess relaxed blood vessels cause less hot flashes. And less anxiety. Who knew?
BTW I didn't notice any hot flash relief until I switched to the long-acting Coreg CR. I initially was on generic Coreg and took it twice a day. But you have to be precise in the timing of when you take it and I was having trouble remembering to take it at the exact time twice a day. My DH suggested I try the 24-hour version. I asked my doc; he agreed. We had no idea it would reduce my flashing until I noticed I was NOT getting them! DH says it is the continual, even release of the drug in my body that provides the sustained vessel relaxation and fewer flashes. FYI.
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Rennasus - That's great and good to know. I need to be on bp meds and may switch at some point so this info is helpful.0
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Mouse6 There is a miracle drug that will stop hotflashes, haven't you heard? It's called estrogen
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ooooh...handy to have a pharmacist hubby...when it comes to drugs, pharmacists are eons ahead of doctors most of the time. glad that is working for you. 90% is nothing to sneeze at!
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lol wen! no doubt. darn ovaries.
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I can't do Effexor and had a terrible time getting off it. This may have been covered already but wanted to ask again....
I've been off Estrogen for a little over a year now - I'm 51 and all of a sudden the hot flashes have gotten so much worse! Wondering why? Do they wax and wane or something? And how long do they go on - I have this awful thought someone is going to say for some people it never goes away - hoping that is so not true but this is awful!
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My flashes definately wax and wane. Although they did seem like they were on the way out at the time of my BC diagnosis. It was also the same when I had a month break in-between Arimidex and Tamoxifen. I work in the medical field and on rare occasions talk with a woman in her 80's who says she still gets hot flashes. I have always thought that'll be me.
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So do I go to the bathroom because the hot flash wakes me up or is needing to go to the bathroom part of this hot flash thing. Ever since I have been on the menopret, I do not get hot or sweat but I have that "feeling" like a flash is coming and then the urge to go to the bathroom. Anyone else ?
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Does anyone know when Tamoxifen kicks in? I've been on it for 2 weeks now and I feel like my chemo flashes are intensifying.
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What would be the difference between taking Menopret vs just Black Cohosh purchased from my local drug store?
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I have been on Tamoxifin for about 1 month. For the past few weeks I have been experiencing hot flashes without the sweat. It usually happens after lunch and everyone tells me my face is beet red. I can feel it. Another feeling is as if I have hives. My skin is itching all over. Anyone else experience this and if so what might be the remeady.
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Shannon...my thoughts exactly! Personally I think the feeling of the flash coming on wakes me up, then I realize, hey, I think I have to pee. Since I've been on the Coreg-CR, even though I don't have the heat or flush of the flash, my body still tells me it is coming on.
Mammalou... 2 weeks in, you should start feeling the effects of the Tammy. Tammy's SEs are varied and vary by woman; an SE may come on, stay a month, go away. It's a train ride (some would say train wreck!). It helped me to make notes to myself on my calendar when SEs began and/or stopped.
Rainbow: yes I have had both the heat of the flash without the sweat, and the itchy skin since taking Tamox. For the skin, I switched to unrefined organic coconut oil, which I used as a lotion on my face and body. Eventually the dry skin SE went away about 4-6 weeks after it started.
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Stanzie, I too thought the menopause stuff lasted a year or so, then was told it could last several years, and lately I have heard several docs say some women have them the rest of their lives. I was finally having fewer hot flashes after 5 years, then the BC + chemo came, tamoxifen came, hot flashes became disabling. Now some days are better than others.... wax and wane... Ah, life goes on....
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n3ypb: before the cancer arrived, I had been in postmenopause for 7 years and the hot flashes, mainly at night or while I'm working were bad - slept with the fan and no covers... I asked the doc if I'm post menopausal, then why do I still have hot flashes... He just laughed at me... changed docs since then... I just started the arimidex and the hot flashes are worse but got some help with the gabapentin.. I am surviving them now - hoping my headache doesn't re-appear - been off for a week and Onc had me restart it to make sure the 8-day headache was from the arimidex.
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I posted this as a separate topic but got no responses...
When I was diagnosed with BC I stopped HRT, and a few weeks after I was completely off HRT I started getting the hot flashes. My BS and MO prescribed a low dose of Effexor, which does seem to help, and at the low dose I don't seem to have any side effects. (I'm not taking Tamoxifen or any AI.)
I do a certain amount of physical work -- gardening, dog walking, and working in an animal shelter. Recently I started having occasional symptoms of heat illness when doing physical work and sometimes when taking a very warm shower: nausea, lightheadedness, and heavy perspiration. My sense is that what's happening is that I'm a little overheated from the work or shower, and then a hot flash hits and nudges me over the edge into early heat exhaustion.
Today, though, it went farther. Coming home from a short dog walk this morning, I became very dizzy and nauseous. I was only a few steps from my gate but I couldn't make it. I sat down to keep from passing out. After a minute I was able to get up and into my yard where I sat down again. I got more and more nauseous and felt hotter and hotter. I got up, anxious to get indoors but I became confused and started going the wrong way. That scared me, big time.
Eventually I did get indoors, got some water, and laid down. My hands were tingling and I was sweating more than I ever have. In a little while I went in the bathroom to wipe myself off and looked in the mirror. I was as pale as a ghost and my hair was soaking wet. These are symptoms of the beginning of life-threatening heatstroke.
I'm feeling better now, but this has got me wondering. We don't have very hot summers where I live and I never work hard on the hotter days. It's very cool today, about 68F when I went out. I do try to keep myself hydrated when I'm working, though today I probably didn't do as well as I should have.
As I say, though, I think it's the hot flashes that are sending me over the edge.
I have an MO appointment in 2 weeks and will bring this up, and I'll be more careful in the meantime. But for now I'm wondering if anyone else has experienced this.
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Stanzie--------yes , there is a number quoted in the literature, that says---x% will always experience hotflashes. I have always felt I was in that x%. Then went on AI's. The serious HF's are only a small % now. Now they are more warm flashes then hot. Thats why I won't think of taking a break of Aromasin---after 10 months, and reducing the norvasc----warm is more common than Hot(2-3 a day). But about half way through this time, I took a break b/c of thrush erradication. It was before, it was identified here that taking a break of Tamox/AI's could start you, at gound zero for flashing. But since that wasn't on my radar yet. I have no memory, for what happened Bummer. It would have been a good learning experience. Not willing for the sake of science to give it a try LOL.
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cycle-path I don't know much, but reading your post makes me think that you are having a reaction to the Effexor. The symptoms you mention don't really sound like " just" hot flashes. I would call your Dr.0
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cycle-path: I agree with Wenweb, you need to call your doctor! It could be the Effexor, low blood pressure, dehydration, low blood sugar or being over-heated (or all of the above). But only your doc will know. Two weeks is too long to wait. Do you have a primary care physician you can call? Stay hydrated and keeps us posted!0
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I'd agree that it could be the Effexor except that I've been taking it since March. Doesn't that seem like a long interval before experiencing a SE?
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cycle-path - That must have been very scary! It may have nothing to do with anything but I would suggest that you see your primary care doctor and just make sure that everything is ok. Describe to him or her exactly what happened. Maybe your doctor will do an EKG and some blood work to make sure everything is ok.0
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cycle-path, SEs of Effexor can occur even if you have been on it for a while. There are several things that can increase its SEs, so you should DEFINITELY call your doc!!! There is a serotonin syndrome that can occur, and can be very serious. Call your doc!
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Cyclepath -------I agree with Wenweb and Ren--------What was the outdoor temp when your symptoms came on. The fact that you collapsed is significant as well as your other symptoms. Heat exhaustion is one thing and not do diminish it as a problem. If you believe it was heat stroke that is super dangerous. Heat stroke is much more significant in trying to get the core temp back to normal. If this happens again call 911----seriously. Carry a working cellphone with you at all times. Call someone pre and post walk as a check in. Avoid outside work until causative factor is known.
(i'll leave this here only for completeness sake Do a drug checker on Epocartes or Genelex. Some drugs have a predisposition to react negatively to the sun and temperature. Then if you put them together, there effects are POTENTIATED-------instead of 1+1 =2, 1+1 =5. Plus discussion of Low blood sugar will give all the symptoms you had. So you have work to do. Google list of each set of symptoms. Have a master copy , then make a working copy that lists all the symptoms you had. Seeing your PCP within next day is important. Again avoid outside activity. If symptoms return before seeing PCP at least you can rule out the outdoors. There are so many things this could be.
Collapse, confusion severe sweating(heatstroke -sweating stops which keeps the heat in even more, that's why it puts it one step up in danger than heat exhaustion)Tingling hands, Pale-------skin temp was? Many of the s/s of heat exhaustion cross with heatstroke up until the sweating stops and the skin temp continues going up.
But it could have been heart, blood sugar, drug interaction, drug reaction, serotonin syndrome.
LOOK you have a complete unknown here, that is highly dangerous. I and ren and wen could come up with a dozen dx's. Take all your meds and see PCP tomorrow. If someone in the family has a glucose monitor, it would be very nice to know what your glucose was at interval in this time, until you see PCP.
If symptoms reoccur before doc contact can be made call 911.
Whatever happened you had and outpouring of adrenaline, you couldn't maintain standing two times, confusion. When things calm down, I can give you a reason for each symptom response. I'll give you one ------just before you collapsed something happened->>collapse->>>>that changed the way blood flowed. the sympathetic system was already alarming the system to the medulla>>>. back to the blood vessels and heart and adrenal glands, and the liver. That's why you were able to get up, but it wasn't enough to compensate for whatever was going on. That's why you went down again. There was enough of asystem response that you made it to the house. THAT IS WHY THE UNKNOWN IS SO DANGEROUS.
All the bolding and capitalizing. You came through a serious situation. You were lucky. Please pamper youself until seen by your doc. Your body went through a serious event. Do not , Do not attempt to self diagnose. You need some serious Sherlock Holmes work here.
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Perhaps since so many of us are on SSRI' and SNRI's we should have a discussion of Serotonin syndrome. --------N3pyb-------would you like to take it on if you have time ? if not I will. Or any takers. If I have insomnia tonight I'll just see if anyone has done it.
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Cycle-Path - when my hubby or I have low blood sugar we have those symptoms... not something to play with - call your Doctor...0
