Hot Flash Forum!
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I have good days and bad days. The Gabapentin helps a lot. I take 300 mgs ay night and sleep well and wake up pain free. By 9-10 a.m., the pain starts creeping back in so I take 100 mg, then 100 mg at lunch. Today, hasn't been enough. I am in quite a lot of pain, back, hip joint, upper spine, headache. Anywhere I have had arthritis pain in the past is now very painful. It feels like the pain from flu/fever combined with the day after hiring a personal trainer. If this is caused by Tamoxifen, I won't be able to stay on it.
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Blownaway. . .you are on a very low dose for Gabapentin. Can you discuss upping your dose with your MO? You have to titrate up but I take a much higher even dose three times a day. Hugs
Scottie
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I actually got the script of Gabapentin from my PCP, not my onco. I did message the onco and let her know about it. Also have been taking 250mg magnesium, turmeric and today I am adding ginger as suggested above. I exercise in the morning on weekdays. I woke this morning with only a little nagging shoulder pain that is sbooting down my arms but its not bad yet. Ill try taking 2 Gabapentin this morning instead of 1. My PCP told me to up the dosage as needed but gradually as suggested above. What a roller coaster ride. I think we should invest in CVS!
Just googled Gabapentin side effects and apparently I sbould not be taking magnesium and naproxin while taking Gabapentin.
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Blownaway---Keep in mind that you need to give each item time to work so you will know which is doing it's job! When I first went on the turmeric/ginger combo my holistic doc said to take one of each once a day for a month. If i got relief, then continue with the same. If I didn't, then add one of each a day. In the beginning one of each a day worked for me. I found relief in a couple of weeks. Now that I've had a hysterectomy and ovary removal, I need 2 a day so I take 1 of each am and 1 of each pm. I have also found it very helpful to keep a calendar of what meds and supplements I take, date started (or stopped) and any strong symptoms I have. When I went through all of 2014 and some of 2015 with periodic nausea and lightheadedness, it was by going back through my calendar that I was able to pinpoint it starting with a double dose of antibiotics and 3 colds back to back. Apparently I had a very low grade chronic sinus infection. A short dose of a different antibiotic cleared me right up and now I feel really good. Anyway, just a thought. Hope you get some relief!!
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Blownaway: Take the magnesium and calcium 2 hours apart from the gabapentin and you'll be OK. Good to gradually increase the dose, 200 mg in the daytime twice daily and see how that does. If not enough after a week, go to 300 mg three times a day. etc.0 -
Thanks ladies, I am taking all your advice and will put it to good use. I agree with Lala1 that I do need to start keeping a journal of meds/symptoms like I did during chemo because I am getting overwhelmed with trying to keep some consistency. I bought the turmeric twice when I went to CVS to get ginger - LOL. Just really screwed up right now but going on vacation tomorrow for almost a week and a much needed rest from work.
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Blownaway. . .I take magnesium citrate, zinc, calcium, B6/B3, flaxseed oil(Omegas), glucosamine, green tea (love sparkling Inc drinks), mulit-vitamin, digestive enzyme gummies and a gummy for hair,skin and nails (biotin). Before cancer my PS couldn't get me to even take Calcium supp on a regular basis even though I'm vegetarian and midly allergic to milk.
I did think about turmeric but researched it and it can mimic progesterone. My cancer was extremely ER/PR + so I even have to mostly avoid soy which was a pre-cancer main stay for me. MO said some soy is okay because of benefits so I limit that to Kashi cereals with soy protein added.I do stagger my meds and take all my supps in between. I take my Gabapentin 3x daily and not with supps.
I track everything on Evernote. Started that right after BMX because I had to track drains and pain meds. So I have been tracking for almost 40 weeks.
Scottie
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Just a little fun tonight ladies. . . here's what I take each day in addition to my anti-cancer and other meds. I hate horse pills as I like to call them, but now if MO approves it and it works, I'm there.
Scottie
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Today my body added insult to injury. I came out of chemo pause and I'm having cramps. Damn!!! Now I have no choice but to go back on the lupron shots next week when I see MO. Can't have my body producing hormones. Bad hot flushes here I come again. I'm praying for a really cold winter. HotLanta better turn into IceLanta.
Meanwhile, I'm at the gym working twice as hard not to gain weight. Uggg
Scottie
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I also have hot flashes with prickles and swelling of hands and feet. I also have a blotchy coloring on hands. I am on Aromasin, the generic is exemestane. I am hormone positive so I have to take this estrogen killer. I have the oh so wonderful hot flashes with the side effects I mentioned, plus joint pain, muscle pain and depression and/or fatigue. I did not have chemo or radiation. I had lobular invasive carcinoma, with that diagnoses I decided to have a double mastectomy and reconstructive surgery.
Still have hot flashes on Aromasin but not as wicked as Letrozole (Femara). With that medication I had hot flashes that lasted and lasted, my face turned red, sweat dripped and I felt that the top of my head would just pop off one day.
I don't have any suggestions but will follow this to see what you all have found to help. Glad I read since the prickles worried me!
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My hot flushes have been terrible the last couple of months. I finished my period after my first chemo, so, in May of 2011. I was on tamoxifen, then letrozole. I'm off both now. I'm 55 years old. Is it normal to still be having hot flushes and for them to be getting worse?
The thing is, I keep hoping they will stop. Is that too much to ask?
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Hi Life, I found that it took maybe a couple of years to stabilize after the last AI.
Suggestions:1 check in with a Gyn doc. They can evaluate all the female stuff to make sure what your body parts and labs are doing that they work with 2. Ask PCP to run some labs Thyroid--Tsh, Free T3, Free T4, Thyroglobulin and autoantibodies. Total vitamin D that will cover D2 & D3. It's now pretty standard to keep the Total D value above 50 (and higher) Actually, the Gyn doc may be cooperative in running all the labs. It'd be nice to only make one doc trip. If you get abnormals on the thyroid and D get a referral to an endocrine doc.
Be cautious --very cautious, if one of the docs wants to prescribe an antidepressant like Effexor. You will see in reading the previous pages that has been a frequent doc response. SSRI's can have troubling s.e.s and can be very difficult to discontinue.
In the first 30 pages when I was active here, we did some significant research, please, take time to go back and peruse.
Good Luck
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Thanks sas-schatzi.
I've had recent blood work taken and there weren't any problems. I take vitamin D and calcium by prescription and lots of magnesium as well. I also take levothyroxine cuz I've had hypothyroidism since radiation in 1995. I've read most of the previous posts over the past few years and I've taken a lot onboard. Tried many things myself but I had to go off most of the medication I tried. The diet I stick to carefully.
I just checked some of Cancer Research UK's information on their website about hot flushes and their recommendations are all things I've tried including Effexor - I was on it for a few years and had to get off of it because of my high heart rate - it was a monster of a medication to wean off of! Horrible!
One of the things also going on with me is panic and I read today that that often accompanies hot flushes. It makes sense.
I think I might just have to ride it out but I wish I could see an end in sight instead of it getting worse.
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Hi Life. Try googling and reviewing Dr Freeman and Dr Freedman. Their life work has been spent on this subject. I haven't looked at their recent research. Key in on their last say 5 years of publications. Might want to get to their base sites Freedman is at Wayne State in Detroit and Freeman is maybe Pennsylvania.
Their are a few drugs that I totally disrespect besides the AI's. One is Effexor and the other Xanax.
That's why I wrote the cautionary about Effexor. Horrible drug.
What about the thyroid tests. In particular Thyroglobulin and autoantibodies?
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Thanks sas-schatzi. I don't know the details of my thyroid results but maybe I should ask for a referral to an endocrinologist. Interestingly, after my last set of bloods in August I had a phone call saying to get my thyroid retested in February. So, maybe something is up and worth looking into.
I am off to look up Dr Freeman and Freedman now - thank you!
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Life, ask for a copy of your labs...........What I have found over the years of asking for the copies is that what we think is being done, doesn't translate to what was done.
If you haven't had a recent check by the GYN doc which I can't tell by your post.
You, me, and all need to remember that each specialty has their body parts with tests that apply to their specialty body parts.
Comprehensive care does not exist.
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Thanks Sas - I haven't seen a gyno in years and I do need to ask for my lab results (again, haven't seen them in many long years). I have been living a bit with my head in the sand but I worry I've become a hypochondriac and don't want to make waves. Our National Health system is very stressed out at the moment here and I guess I think I can make a difference by not bothering my GP. Silly, I know. But I keep waiting to get really really ill or in pain before I say anything.
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Hi Life, I didn't notice that you are in the UK. UGH, I love the UK, but trying to get tests done can be a real trial. I have a friend there that has a kiddo that needs a serious look as something isn't right. She's getting a very bad run around. Here it would have been managed with ease. I'm talking simple basic tests. Unexplained repeated serious nosebleeds that take them to the clinic and they won't run a simple CBC, is wrong
back to you, b/c of your hx, it's warranted to have a GYN review. When S&S's (signs and symptoms) change, is it a flash in the pan thing or is something going on. New onset HF's after a long period of none without a drug change, can be something/can be nothing. With BC we don't mess around.
If a thyroglobulin and autoantibodies haven't been done along with the standard thyroid studies, it's an easy miss for a change in thyroid status. Thyroid problems are common in BC patients. Plus, depending on how the results are reported can mean something more serious than Hashimoto's is going on. HF's can be a symptom of thyroid dysfunction. I'll keep watch to see your reports if you can get them
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Thanks Sassy. I'm armed with your wise words and will get myself to the GP to check my thyroid out!!!! As far as getting sorted out here in the UK on the NHS - it seems that you have to be thick skinned and pushy - which I am not - but I am going to try harder
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So glad to find this thread! Just dealing with the aftermath of a lovely hot flash here at work!
I had a hysterectomy at 44, and went on HRT afterwards. I was taken off last October after my initial diagnosis. Just started Arimidex a month or so ago and the flashes are back. I'm hoping the Gabapentin will kick in soon.
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Deacon, please, try to read the entire thread over time. AND don't let them give you Effexor...........
Life good luck.
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Thanks, sas-schatzi! I will read when I get a chance.
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I agree with Sas. My MO prescribed effexor - 75 mg. but fortunately I read a lot about it here before taking any. Today I got a script for Gabapentin instead which is supposed to help with hot flashes.
Like you I had a hysterectomy at 40 and went on estrogen only until my diagnosis with BC. Even though quite a bit of time had passed the hot flashes came back with a vengeance. Gabapentin worked for me although it was originally prescribed for nerve pain. Hopefully it will help you.
Anne
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dAd - I was given a 3 month break from Tamoxifen by my onco due to s/e's. I am weaning myself off Effexor and should be off entirely in another week or so. I also take Gabapentin.600 nightly. Tried 300 morning/night but my (I assume nerve pain) came back. Feels like deep bone pain.) Have had bone scan - nothing there. I have pain/stiffness in wrists, hands, down spine, arms, legs and headaches that come and go all day. I thought some of my pain stemmed from Tamoxifen but since I have not taken it for almost 3 weeks, I have to assume that it is repercussions fom TCH. What strength Gabapentin are you taking?
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Blownaway, Ah the weaning. Could /would you share your weaning schedule. I may have a suggestion for that last phase. During the past time I was here actively, it was around page 30. I don't remember posting it, but my counselor said that switching to Prozac in that last phase from SSRI's and SNRI's after the smallest dose of Effexor and other in the two classes was an approach that can be used b/c Prozac can be given in 5mg (? my memory) increments and tapered down even at a slower& lower dose over a period of time. i.e. lowest dose of Effexor is 37.5, wean that for prescribed time, then switch to the next lowest dose of Prozac. Then taper on that.
The common that I remember, was that folks had a great deal of difficulty after dropping from the last lowest dose of Many of the SSRI/SNRI's. That caused some to go through a terrible time or return to taking the drug b/c they just couldn't deal with the body response. Effexor was the worst.
That does reinforce to anyone reading this, why it's important to read from the beginning.
As a practicing nurse before BC 2009, I never had an opinion about Effexor. It was here on this forum, I learned to totally disrespect the drug. One it didn't work for HF's, as evidenced by the words of the women here from the beginning pages. Also, at the time, it was the most commonly first prescribed drug off label for HF's.
The horror of weaning along with it not working, were why I came to the disrespect the drug.
I'm not sure b/c memory is somewhat screwed, that gabapentin was being used off label in the early time I was here, or if ladies reported it since b/c I wasn't here.
Anyone reading this that's into research, it would be nice if a search could be done for it's application to HF's.
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Blownaway, I have a couple of suggestions, you used some trigger words for me.
" Feels like deep bone pain.) Have had bone scan - nothing there. I have pain/stiffness in wrists, hands, down spine, arms, legs and headaches that come and go all day". I have had many of those symptoms lifelong, but the accepted excuse was post polio. As all can be S&S's of post polio. It was a "just live with it" scenario for post polio folk's.
In 2007, I was tested for Vitamin D levels. Range 30-50 - to now unknown as research for the true upper normal is in flux. But 30 is the accepted low number. Mine was <4 not detectable. Endocrine doc's question was "Do you ever go in the sun?"
Over the last 10 years the amount of D3 prescription or supplement has varied as the research is popping in the area. It now is accepted that having the D lab value in the range of 80-100 is better. This is the first time I used the word popping. Lot's of research, with many variances on best range and intake of supplement needs to meet the range. I think it will take several more years before the dust settles. YogaGirls thread has allot of the current research. I'll try to bring her link.
The reason I have belabored this by this long post IS
when I got into the higher D level lab range, the deep bone pain was gone. It did decrease at the normal lab range, but the higher range ....gone.I always hate to say something is gone.....it's like a jinx. But that deep GNAWING pain is so awful. The only other drug that caused that deep bone pain was Neulasta. I described that as "pain scale of 100 and felt like Wolves gnawing at my bones and I was alive" I teach the Pain scale of 0-10, so me too go outside how I teach it, is significant.
My last D level was 89. It's delicious to not have that deep bone pain. But from the initial dx to correction, it took some time. The endocrine doc(since fired) at that time believed that getting over the low accepted normal was adequate. It was nice, but can't compare to how I feel at the higher lab value numbers.
But as a qualifier, I also, had thyroid dysfunction identified in 2013 --goiter. Ultimately, thyroid cancer............so, whether that, also, was a long standing problem is likely true. Whether it influenced all symptoms is a possibility. Mixed bag.
Bottom line, is have your D levels done and then let's have a chat. Please, look at yogagirls research. https://community.breastcancer.org/forum/136/topics/844633?page=1#idx_13
I'll leave you with a thought. The way D is prescribed in severe deficiency as mine was, is 50,000 units once a day x's 7 days, 50,000 units once a week for 6 weeks, then 50,000 units once a month continuous till it's over 30. Then on maintenance. ( remember it's in flux for normal range)
The first dose of the 50,000 units, I felt like my body was awash in warm chocolate.
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SAS - Another way I have described the pain was the way it feels when you have a high fever due to the flu. Like your bones are hot and going to melt.
I have weaned off Effexor once before because it didn't help wih the h/f's but decided to try it again. Really couldn't tell any difference. I was taking 150mg daily and reduced it by taking 75 and 150 mgs, alternating daily for 1 week, then 75 mgs daily for one week, followed by 75 mgs every other day for one week, then every 2 days until the bottle was empty. Didn't have any problem with this regimen. I am now going to check my labs to see if D levels were taken and if so, what it was.
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Blownaway( love the song), but guessing you chose the screen name for a different reason? Are you off the drug and for how long?
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Sas - not completely off Effexor yet. Will be starting the week of 75 mgs every other day this coming Monday. No problems so far.
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Blownaway, I recognize that you have weaned once before, successfully, per your post. What I'm going to write is not just for you, but also for others that follow.
Each persons weaning off the SSRI and SNRI's reacts differently. Done too rapidly for an individuals body to adapt, can wreck havoc. The slower the weaning the better. Cold turkey or too rapid can have dire consequences. You will read in past posts stories of consequences.
The switch to Prozac at the bottom end of weaning is a good plan. But just a suggestion from my counselor with 40 years of experience
I'll give you a worst case scenario of weaning. Regretfully, it was my DH Greg. He was prescribed Zoloft 50mg by the MO. He had a s.e. I forget what, but it wasn't a in the dangerous zone. His MO said "Well you can stop it." I said "You need to wean, and under these circumstances, no less than 10 mg a week" Greg "The doc says I can just quit." He would not listen to anything I said. The doc was a MO not a neurologist, not a pharmacist, and not a psych doc. The doc was a MO. His schtick was cancer drugs, not psychotropics. The other three docs are experts at knowing how the drugs work. MO's are not.
His weaning---over 7 days, he cut from 50 to 0. We fought about it the whole time. His response was always. "My doc knows best". Within 24 hours of last dose. He developed numbness. Everywhere.
Testing showed he lost all sensory feeling to the skin and muscles. That he had the potential to regain return sensory to the muscles eventually, but he would never have skin sensory return to the skin.
We never did the I told you so talk.
On the day he died, he was ambulatory and versant till 6 hours before death. In a private moment in the last 24 hours, he was petting Schatzi, he said. " I can see her, but I can't feel her." That was his first admission that he couldn't feel. Yet, it had been months.
These drugs are beneficial, but must be treated with great care b/c they are powerful and damaging if not treated respectfully in their use and discontinuation.
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