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Vivelle Dot Weirdness - migraines Vivelle Dot Weirdness - migraines

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  #1  
Unread 08-31-2012, 11:21 PM
Vivelle Dot Weirdness - migraines

Hi everyone,

I am a migraine with aura sufferer and tried taking oral estrogen to no avail. Although it started to stabilize my moods, it gave me consistent migraines 12 hours after I started taking it and steadily since. (1 mg)

I tried to stay optimistic and switched to the Vivelle dot today. (.375). It's been on me for about 6 hours and boy, do I feel weird. Migraine pain, and some odd tingling in the left side of my body.

Is this normal? I don't have stroke in my family and I am only 45 and am otherwise healthy.

Is there an adjustment period with this med?

Any similar experiences?
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  #2  
Unread 09-01-2012, 03:24 PM
Re: Vivelle Dot Weirdness - migraines

The migraine caused by oral estrogen (for those of us who are migraine sufferers) usually happens at about that time period because the levels fall way too much. You can troubleshoot by adding a second dose or splitting your current dose in half.

Sometimes just changing the form of delivery can trigger the migraine. You may need to just give it some time. A surge followed by a drop is my trigger. If my dose is too high or too low I get just the nagging persistant headaches that are not a migraine type.
  #3  
Unread 09-01-2012, 06:27 PM
Re: Vivelle Dot Weirdness - migraines

The problem for me has been that when I tried estrogen both orally and via the Vivelle dot, that the migraine pain just seemed to consistently match the estrogen levels in my body.

The oral dose was .1 mg of estradiol. That left me with consistent low-grade migraine pain on the left side of my head including a stuffy left sinus and pain in my left ear! Ow! I started cutting the pills in half and that seemed to lessen the migraine pain, but did not eliminate it. My doc said that because I was diagnosed with "atypical migraine" in the past - migraine that can manifest itself on one side of the body as well as on one side of the head, that she was worried about stroke risk. So, we switched to a patch and lowered the dose, (.375 Vivelle dot), which, within four hours made my head feel migraine-y yet again and I felt tingles on the left side of my body.

I took the patch off last night and plummeted into deep depression and crying spells today (with, you guessed it, no migraine pain).

Everything I read seems to suggest that for younger women (I'm 45 years young) that HRT is really essential to maintain health and wellness. I am so afraid that my body will not be able to tolerate estrogen and that I won't be able to escape the ill effects of no HRT, including horrible depression and anxiety (for the first time in my life). It's like my brain is yelling at me, "Hey, regulate me!" But it can't. I am also only 5 1/2 weeks post op, so I know I am being really impatient with myself, which doesn't help.

My fears are as follows:
  • surgical menopause (particularly depression/anxiety and fatigue) will not end (I am trying my my first dose of an antidepressant tonight - Zoloft).
  • I will not be able to take HRT and my overall health will decline (even though I eat well, maintain a proper weight and work out)

If anyone has any wisdom out there on atypical migraines and HRT, I would really appreciate your advice. My surgeon discharged me with a smile on Tuesday because the physical healing is going well. Now, I feel isolated and lost and I don't know where to turn.


Any advice?
Thank you again, dear sisters!
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  #4  
Unread 09-01-2012, 08:33 PM
Re: Vivelle Dot Weirdness - migraines

My migraines always manifest on one side as you've described. I just assumed that was the typical pattern. I started on Oral Estrace back in the late 80's and continued for 17 years until I tried one delivery after another. I'm again back to the oral after many failed attempts with others. When I suggested halfing the medication, you would need to take the other half about 8-10 (or so) hours later. If you don't, your level drops again too low and it triggers the migraine. Those of us that are migraine sufferers can't seem to get by with the once a day dosing.

I hope others will come along to offer their support as there have been several sisters who suffered with migraines while trying to adjust to the estrogen. Your body is not only healing but trying to readjust to a static dose of estrogen at a level that may or may not be exactly what you need. Your body is also using up its stores of estrogen.

I know there are those who haven't been able to use estrogen for some particular reason, but there really ARE many benefits in using it. The aging process happens so fast when the estrogen stops. There are benefits to your cardiovascular system, digestive system, nervous system, and your bones and skin to mention a few.

I think an antidepressant is a great idea during this time period when nothing feels right. I used one myself when things were really bad. Sometimes it's the kindest thing to do until you get things figured out. It definitely smoothes out the rough edges.

I hope you and your Dr. can find something that will work for you!
  #5  
Unread 09-01-2012, 09:37 PM
Re: Vivelle Dot Weirdness - migraines

The wisdom you share here so valuable to me and your years of experience is so helpful. Thank you so much for your candor and honesty. I agree with you about getting the level right because it seems that in the first few hours after I've taken estrogen I feel on top of the world and after about five hours the migraine kicks in. I am wondering if you have tried the patch and why it did or did not work for you. Thanks again!
  #6  
Unread 09-01-2012, 10:49 PM
Re: Vivelle Dot Weirdness - migraines

I did try the patch. I was actually using Vivelle Dot for several years...different doses. My Dr.s at the time didn't ever check my estradiol level. I ended up moving onto compounded cream, gel and sublingual drops. No luck feeling well either. By then I'd found a Dr. who believed in testing levels and I went back to the patch again. I still feel that it's the most ideal situation for replacement. I initially thought I just had an issue with the patch not adhering well. I fixed that only to discover that even on the highest dose my estradiol level was only 41. For whatever reason, I just didn't seem to absorb well. It was REALLY disappointing! I had run out of options and didn't really want to go back to the oral method because of the migraines. I didn't have much choice though. With my estradiol level as low as it was, I was suffering with horrible anxiety, panic attacks, tingling and electrical sensations,...actually a laundry list of things. I had no choice but to troubleshoot and it's paid off.

I don't think I'd give up just yet if I were you. Your Dr. has to start somewhere with dosing. They usually start low and work upward. Your .0375 dose patch is pretty low. I don't know what your age is, but it seems that a lot of women who do well on the really low doses have been on estrogen for quite awhile.

Not all women experience it, but the anxiety, low grade (or not so low grade!) depression, and crying are really common when you don't have the estrogen that your body needs. It does seem to build up a little bit and your body gets its equillibrium back as time passes. That sounds like total nonsense when you feel as awful as you do right now. The hardest thing on your body right now is to change doses and deliveries too close together. I truly wouldn't be surprised if your Dr. maybe went the wrong direction and should have gone up instead of down.

Have you started to keep a journal yet? It's the absolute best thing you can do to track what's happening with your hormones. I've been doing it for about 8 years. I write things like my sleep patterns, hormone (dose and timing), any physical symptoms, any psychological symptoms, and anything relevant that's going on in my life that day. Patterns start to emerge when you see them on paper. Just keep your journal in a really convenient spot so that you remember to write EVERYTHING in it. It's very helpful when you talk with your Dr. as we sometimes just tell them how "awful" we feel without describing what that means.

Again, the antidepressant might really help until you get more situated. We all just watch out for the Dr.s who think that the AD is the solution and not just a tool to use while searching for the real solution.

I don't know if you've done it already, but you might try to search the No Ovaries Yes HRT forum a bit. Use migraine as part of your search. There are plenty of us who've had to try to work around this one. You're definitely not alone!
  #7  
Unread 09-04-2012, 07:36 PM
Re: Vivelle Dot Weirdness - migraines

That was really good info. I use the patch. Oh I could give you a list of hell I was in. thr patch alone dor alot of seems to get our e up to 40 im on the ..1 and with alot of trial and error I had headaaches everyday. Anxiety panick. Insomina was kicker. So I started a low dose ssri and it helped while trying to figure this out. I read and asked hormone specialist. Got advice from some wonderful ladies here and what I came up with is leave the patch for tbe steady dose and add estrogel in small doses. I really sat down and thought about what hormone did what and low estrogen can trigger migranes. Did you always get them around your period? I would and everytime my e is low I get mild ones. The patch does take about 4weeks but .35 is very low. I tried that when they thought I was to high that triggered the insomnia. So maybe if you like the patch you could try adding to it or break your pill and keep it steady the is part of the key finding what will keep you steady. The zolof will help you feel calm while letting it kick in
  #8  
Unread 09-07-2012, 09:24 AM
Re: Vivelle Dot Weirdness - aura migraines

I have never experienced an aura migraine until I tried vivelle dot, it was within a few days after applying the vivelle dot patch. I ended up with memory loss and slurring of speech for 10 minutes, I thought I had a stroke, went to ER had a full neuro work up. It was not a stroke luckily. Very scary. I took climara before with no problems for years.
  #9  
Unread 09-07-2012, 12:58 PM
Re: Vivelle Dot Weirdness - migraines

Why did you switch?
  #10  
Unread 09-07-2012, 01:04 PM
Re: Vivelle Dot Weirdness - migraines

The doctor at the time told me I would get better coverage on changing patch 2xs weekly instead of the one....I suffered with extreme hot flashes when the doc tried to taper me down on the climara. I am back on Climara since, but now having endometriosis pain...
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