Hi Everyone,
It’s been a long while since I have posted here and have had lots of different things happening with me beside the MAV. I have been diagnosed with beginning stages of RA, Fibromyalgia and also am struggling with horrible menopausal hot flashes all night long.
I have not been able to sleep more than 3 hours for months and feel like I am losing my mind. I sweat so badly from the hot flashes my clothes, bedding and hair become completely soaked. After that happens I start shivering because I am freezing cold from the wet clothing. I end of getting up taking everything off and taking a hot bath 2-3 times per night. I then have to change into another set of clothing each time.
My regular gp that was helping me through everything because Dr. Baloh said there was nothing he could do for me left in December. Now I have to start all over and am so frustrated yet again. I have only been able to see a physician’s assistant so far and she has never heard of MAV. So far she has given me Alprazolam, Lunesta, Trazodone and Ambien (generic). None of these have worked for me at all. The last few nights I have been on 10 mg. of the Ambien and it takes at least 2-3 hours to get to sleep and then I sleep for 1-2 hours. The new doctor I am seeing said the drugs for sleep are limited and she has given me what is available.
I am unable to function during the day anymore and am lucky if I get a few household chores done because I am so exhausted. Thank goodness I don’t have a job or kids right now because that would be a big problem.
If anyone has any words of wisdom or advice, please help.
Thanks,
Donna
Hi Donna I had terrible hot flushes in 2011 which worsened my dizziness and balance so much that I couldn’t function for 6 months. Was put on hormone replacement therapy which stopped the flushes but not dizziness but I suppose damage already done by then. Apparently Prozac can help wptg the flushes too. Angela
Thanks for replying Angela. I have taken Prozac and that hasn’t helped at all. I wish I could take hormone replacement therapy but can’t since I had stage 2b breast cancer when I was 28 years old in 1994.
So sorry to hear that. I related to your story, as I, too, have night sweats. however, it is not menopause related. I was diagnosed with Lyme disease and Babesia (Babesia seeming to be the culprit of the night sweats) I’m sorry. I’m feeling too ill to replay my story. but, it is in the Other Illnesses and Conditions section. or can see here. http://mvertigo.cloudapp.net/t/update-lyme-diagnosis-after-over-5-years-of-suffering/6264 you’ll see there was a bit of back and forth over this diagnosis, so hopefully you can read both sides and see if you think it’s worth exploring for yourself. any questions, msg me anytime. If you already saw this thread I’m sorry if I’m being repetitive.
So sorry to hear that Donna. Hot sweats are just awful and I feel for you. Have you tried Black Cohosh which apparently works too. Hope you can get some relief somewhere. Sounds like you are having a really bad time at the moment with various problems and I suppose relief for just one of them would help enormously. Have you seen a neurologist at all?
Lisa,
Thanks for replying. I definitely believe that my problem is menopause related and was the “big bang” that started the whole MAV thing. Dr. Baloh at UCLA agreed that is probably what started all of this.
Angela,
I have seen 3 neurologists including Dr. Baloh at UCLA who is well versed in MAV. He basically said that there is nothing else he could do for me as I’ve tried everything already that he would have tried in order to help me.
HI Donna,
There are a few things that come to mind.
Have you had a thorough thyroid test?
Have you checked your hormone levels? Even if you opt out of taking estrogen, it might at least ease your mind to know that this is the cause. (more on that later)
Low serotonin…
You can try to augment your sero levels with supplements if you don’t want to try a pharm…(i.e. melatonin, and 5HTP)…if you are interested in doses and amounts, let me know as Ihave done a lot of research on this.
Re: hormone therapy…the bioidentical hormones raise the risk of breast cancer by less than 2%, but actually protect against heart disease, and uterine cancer, which both have high mortality rates…so it’s a bit of a question of odds…I totally get that you would be afraid, but it might be worth it for a quality of life. The old hormones made from horse urine etc…aren’t the same as the bioidenticals…
As you know, sleep is so important to keep your Mav at bay…some meds you might want to consider:
Remeron at a low dose (it comes in 15mg tabs, and I would suggest half a pill)
Restoril…a benzo that will help with sleep…
Promethazine…It is an antihistamine that has helped me a lot with sleep and also with dizzies…
Feel free to PM me if you have any questions…
Best to you…
Kelley