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Decided to stop HRT - Help! Decided to stop HRT - Help!

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  #1  
Unread 04-05-2005, 10:17 PM
Decided to stop HRT - Help!

I had my LAVH/BSO late last October. I went on vivelle dot about a week after. Everything was going along fine until about the end of January when I suddenly couldn't sleep. I was waking up after about 3 hours with severe trembling, muscle jerks, head shocks, etc. I became extremely depressed and weapy. I went to my regular GP and he did a total blood workup. Estradiol was at 144. I then switched to Estrasorb cream. I felt like it was making me crazy. He then told me I might have Multiple Sclerosis. I freaked out and then got an MRI. Then I was only sleeping about 2 hours a night. He gave me Ambien and Valium. I tried both. They would only keep me asleep for about 3 hours! The MRI turned out fine and then we found out that I had high a high glucose blood level. I have managed to get the blood sugar under control. I've lost about 7 or 8 pounds since February. I went to my DD (GYN) I told him all that was going on. He gave me Lexapro. I took it for 3 days and got severe burning down my arms, up my neck and in my head. The "shocks" got even worse. My nerves have been so worked up that I feel like I'm going to pop out of my body or explode. Shakes in the face and frontal part of my head...shocks in my tongue, sensitive, painful teeth, muscle jerks at night. I stopped it after 3 days but didn't start to feel any relief for a few weeks. Then DD gave me Estrace and told me I could continue with the patch or the cream. The first day I took it I felt ok. The second day I took it I got the worst headache and severe shakes, again.
I didn't take it for a few days and put another patch on...and here it goes again...shakes, shocks, etc. I have not slept a full night since January. Two days ago I just took the patch off and decided to go off of HRT on my own. I feel like the Doctor's are going to kill me!!!! Anyway, I have been taking restoril for the last two nights and have managed a straight 5 hours of good sleep. I can fall back asleep for about another hour or so but the second leg of sleep is not good sleep. I wake up feeling horrible and my head and face is still very shaky. I also started to take St. John's Wort the day I went off of HRT. DD gave me Wellbutrin but I didn't want to take it. I haven't managed to get rid of the headaches all the way. I have been severely moody today but somehow feel that I might be on the right track. I have been suffering greatly for the last2 1/2 months.

Have any of you sisters had any of these symptoms? Also, those who have just stopped their HRT, how long does it take to start feeling better?

Before all of this, I was an upbeat active person... I don't know who I am anymore and am wondering if I will ever feel normal again.


Donna
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  #2  
Unread 04-06-2005, 08:40 PM
Decided to stop HRT - Help!

Hi,

I did not have the symptoms you have had, and had good results with estrace and vivelle dot. I did get off after a year on it just to see how I would do and I had the hot flashes and still do, but they are not as bad as in the beginning. Everyone is different. It may get better for you in a short time or take a little longer. Some of us have symptoms of menopause for more than a year, but less intense sometimes.

The St. John Wort worked for me and kept me calm and not depressed and helped with hot flashes some.

Let us know how you do off of hrt as your body has time to adjust.

s
  #3  
Unread 04-06-2005, 10:39 PM
Off hrt this week.

Thank you for your reply. I'll keep everyone posted. So far, not too much better. If anyone else has any input it would be appreciated!

Donna
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  #4  
Unread 04-10-2005, 05:44 PM
Decided to stop HRT - Help!

Have you had your thyroid levels checked? Sounds like it could be that.
  #5  
Unread 04-10-2005, 06:25 PM
Decided to stop HRT - Help!

I have had all my blood levels checked. The thyroid is fine. I have had a decrease in symptoms this week. I still do not sleep a full night but and wake up several times, but have had better quality sleep and longer sleep time. It has been one week since I have stopped HRT and started with St. John's Wort. I have an appointment with a cardiologist tomorrow and will also be seeing an orthopaedic surgeon and a neurologist. My DD wants me to cover all bases. But I have had an improvement. My moods have just begun to become slightly more stable and not too many muscle jerks. The spasms in my face and neck are still there but not nearly as bad. I've had about a 50% reduction. My blood sugar has become stable also.

I will continue to keep you all posted. This is very interesting at best!

Thank you, sisters, for your support!
  #6  
Unread 04-11-2005, 08:38 AM
Decided to stop HRT - Help!

Donna,

I know this can be a scarey experience especially wondering if the dd knows what he is talking about. I went through a bit of a scare myself and realized that my dd didn't know what was going on with the estrogen. My estrogen levels went down to 37 and I felt like I wanted to die. I ended up with IBS for awhile and funny you mention that but my fasting blood suger was 110 and before the surgery it was 90. Now 110 isn't high but it is high enough for me to change my eating habits and exercise. Estrogen can cause some people to have a rise in blood sugar. I have read where stress can effect it also. Try to go slow with everything and don't make alot of changes all at once. Just giving you a hug because I had a nightmare of a time awhile ago with everything but now I'm ok.

Pam
  #7  
Unread 04-11-2005, 08:41 AM
Decided to stop HRT - Help!

Hi Donna...Welcome to the world of HRT. So many choices.

I had my surgery almost two years ago. My
put me on Premarin right away. Even with that, I couldn't get to sleep, let alone stay asleep. I had no terrible shocks like you, but boy did I have weird dreams and I sweatted ALOT!
After 6 months, I decided to go off the Premarin. I still get some hot flashes now & then, and I sleep better most nights. It has taken some time, but it gets better. Everyone is different, some take more time to adjust.
Have you read Suzanne Sommers book "The Sexy Years"
If you are in a book store, pick it up and browse a little. She talks about another way to replace lost hormones. And it is her own story of breast cancer survival and her menopause.

I wish you the best hang in there :dance2:
  #8  
Unread 04-11-2005, 09:30 AM
Decided to stop HRT - Help!

I do have a feeling that stress and MANY changes have a lot to do with this. I am struggling but working on it. I just want to feel better.

Last night was a bad night. I think it has a lot to do with stress, shock, etc.

Keep posting, sisters. I need all the help I can get!!
  #9  
Unread 04-11-2005, 04:42 PM
Decided to stop HRT - Help!

Donna,

You mentioned having a lot of stress. I am beginning to suspect that a lot of my health problems may be attributed to a great deal of stress I've been going through for the past few years. I was reading up about the adrenal glands and how stress can cause them to wear out. I also think that's why some women do so much better without HRT than others. When you no longer have your ovaries, your adrenal glands have to kick it up a notch and try to make up for the loss of hormones. If you are healthy and not bothered by stress, then it's not going to be a big problem. But if you have been under a lot of stress, or if you've been sick your adrenal glands are already working overtime. Then you add the work of trying to make up for your lost hormones and you can have a helluva surgical menopause.


I'm taking B vitamins and others. I drink licorice tea. You have to be careful with licorice, you can actually overdose from it. So be careful. As always, check with a doctor.

(Please check Resource library at the top of the page for info on adrenal glands).

Hope this helps you.

Take care!
  #10  
Unread 04-12-2005, 11:29 AM
Yes!

I have had a lot of what you describe and have an appt this month to see a neurologist. I have had tons of blood work, thyroid checked, MRI and spinal tap. My estrogen levels in blood were 136 when I was taking estrogen replacement. My docs suspected MS as well and are also looking at the possible diagnosis of psuedotumor cerebri. Not being convinced that those suspicions were accurate I decided to come off of all my estrogen replacement to see if my symptoms got any better. I'm now 3 weeks out without estrogen and don't feel any different what so ever. I'm still going to my neurologist appt to make sure nothing is seriously wrong but I really highly doubt it. I have a lot of confidence that a lot of what I'm experiencing is due to hormonal imbalance. After reading here I found a doc willing to give me progesterone because I fit every single symptom in the low progesterone catagory as well as now fit every symptom in the low estrogen since coming off.

The electric shock feeling, shakes, insomnia, headaches etc have not gotten any better for me by coming off of the estrogen. Instead I've piled on a whole other list of symptoms by going into menopause. Night sweats now along with the shakes, foggy thinking etc.... BLECH!!

Not sure if sharing my experience with you helps but know you are not alone and not crazy because there is at least one other person out there feeling very similiar. 's
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