I Don't Know How Much Fight I Have Left

Just reading your post from April. I feel like you and I are in the exact same boat due to mine starting when I was 29 and I’m now about to be 40 in a month. Mine seemed to turn on just like a light switch…out of nowhere…and has never turned off since. Wondering if anyone else feels this way about how theirs started? I forgot to mention in an earlier post from today that I went on low dose birth control for a while, which seemed to help. Problem was I gained 12 lbs in 4 months. Ugh. I’m now using progesterone cream from day 14 through the end of my period, but I’m only on my 3rd month of trying this. Not sure if it’s working or not yet. Would love to know how you’re doing!

Hi Margret
Firstly i need to tell you im in a much happier place mentally than i was in April and coping much beta with the condition. …i had ACT therapy and to be honest in the last 10 years has been the only thing that’s helped :grin:
I too started with this really suddenly at the same age you was ! …
1.Did you have migraine as a teenager that went away ? They think that hormones are to blame :confused:
Go mad when yr growing. .get better then come back as this.
2.The nuro hospital concluded that my MAV has a strong hormonal influence. …the attacks don’t correspond with my periods but happen every 36-38 days…ive worked out that this is around the time i ovulate ( apparently this only occurs every other month at our age ) .
The chain of thought is that highs and a huge drop of oestrogen causes the migraine leading to the vertigo …this maybe way the prostengen is not helping you ?
3.my gp wont let me have the pill as he says women with migraine are in danger of stroke with the pill .
4.i did try oestrogen cream but the max was 10 days use…this stopped the attack happening when it was due but as soon as i stopped it the attack started ! !
5.Try keeping a calender of period days …dizzy days and look out for signs of ovulation ( Google it …temperature taking is a goodun ) see if there’s any patterns.

Im just praying for an early menopause. …I reckon all this will stop when my hormones drop out !

I hope this helps you…good luck hunny …keep positive
Xx

That’s so funny! I just told my husband the other day that I wish I would just go ahead and go through menopause. Maybe the nightmare would end. On another note, I will say that I felt pretty good on low dose birth control and my obgyn said you have to weigh the benefits vs the risks. I would’ve stayed on it longer, but I was continuing to gain weight, and that was doing nothing for my self esteem. :confused: Keep me posted on how you’re doing! So glad to hear you’re doing so much better! I was in a really bad place with it all as well last year until about June. Finally, got a break and a combination of meds that seem to help tremendously. :slight_smile:

Morning Margret
We must be the only two women in the world actually looking forward to the menopause ! LOL

I think that’s a very good way of looking at the meds to weigh the benefits and the risks.I might try to talk to the Nuro hospital in April about low dose oestrogen maybe.
What other meds are you on ? What have been the effects / side effects ?

All the differing meds Ive tried have had side effects in way one or another .Flurazine made me balloon!
Im not convinced anymore about medications,dont know if its related but i developed a low thyroid whilst trailing differing meds.
Now on thyroxine for life .
If you keep gaining weight now matter what you do it maybe worth having a thyroid blood test…Another joy that comes with our age apparently!!
Take care X

I know. The weight gain coming along with getting older is just icing on the cake, right! :wink: I quit the birth control a few months back, and am currently applying prescription progesterone cream from day 14 through the end of my period. My obgyn thinks I’m estrogen dominant which causes migraines in many women. It seems to be working…December was a fantastic month as far as feeling well…but being only 3 months in I can’t say for sure! I too have tried lots of different meds prescribed by my regular doctor and specialists, but most didn’t work and many had bad side effects. I’ve tried Topamax, beta blocker, blood pressure medicine, prescription diuretics, Amitriptyline, and others I can’t remember. Those are just the most recent. I currently take low dose of Lexapro and have for years due to the anxiety this disorder causes. (For years doctors just thought I was having anxiety even though I kept telling them my anxiety was due to feeling like I was on a boat 24/7 and almost constant headaches with fullness in my ears.) Things got pretty bad for me during fall of 2015 and I was put on Klonopin at bedtime…lowest dose…and an Ativan in the morning. Fortunately and unfortunately, this combination seems to have turned my life around, but I fear being on those meds forever as your body gets addicted to them. I’m so paranoid that I only take 1/2 to 1/4 of an Ativan in the morning now, but haven’t attempted not to take one at all as I can already tell the difference when I only take 1/4 vs 1/2. Anyway, as I’ve told others I by no means recommend those meds to anyone. It’s just where I’m at in this crazy process of trial and error. :relaxed:

Hi Margret
How are you getting on with the progesterone ?
I’m going to try the mini pill in December back to back so that I don’t get any periods for 3 months and see what happens.
I’m hoping this will be my miracle cure as now the attacks are coming very frequently and are a lot more severe in intensity .
I’m thinking about going on some kind of anti depressant as I spend a lot of my life at the moment on edge waiting for the attacks to happen and feeling extremely depressed about it all .:0(
Sarah x

Just wanted to share an article (guideline) if you do not have a diagnosis and the treatments are not helping.

http://www.jvr-web.org/images/Vestibular_paroxysmia_Feb2016.pdf

Could it be the above? Check it out. Try keeping a diary (including exposure to low frequency sounds & minor head jerks as in car rides) to figure out the precipitating factors. I had it for 4 years nonstop (even in my sleep) and currenly I do know that sounds and the tiniest head jerks brings back my symptoms after being free of symptoms for over 30 days last month. So, don’t give up. Good luck!

Is this another one of these ‘hypothetical’ explanations and diagnosis? What is described there is effectively a glaucoma like compression of the nerve? I thought that science tells us that pressures even within a sick ear never reach that high so ‘glaucoma’ of the ear is not possible? Dubious.

It is the cross compression of the vestibular nerve with an artery/vein

Read up on Dr. Hain’s website for further information.

I am blocking out all sounds with Silicone plugs and is trying to avoid all chores that requires head jerks, hopefully it will take me back to where I was a month ago. I will notify you all the results. Since winter is here hopefully I can stay away from gardening.

Sorry Gracy didn’t mean to sound glib. Just so frustrated with the lack of knowledge and solutions in the midst of all this uncertainty and suffering. Ugh. Good luck with the plugs and keep us posted. James.