I am new to this website and am grateful to have found it. I have only had my symptoms for about 10 weeks, which actually seems like a lifetime to me. It all started with an intense attack of vertigo. Since that attack, I feel dizzy several times throughout the day and every day. My headaches are usually low grade or sometimes none at all with the dizziness. In addition, when I start to feel dizzy my arms feel weak and shake, my eyes feel weird, and become nauseous. I have gone to many different doctors and had several tests including an ENG, Brain MRI, and lots of blood work; all normal. My ENT believes I have either Menieres disease or MAV. Even though I have mild tinnitus, my hearing is perfect, so he is leaning towards MAV. I think I have MAV because every time I go into a place with bright fluorescent lighting, I start to feel dizzy and sick. In other words, I have noticed things that trigger my dizziness. One thing I do find bizarre is that when I drive my car I donāt feel dizzy and I donāt have any symptoms. However, when I stop the car I will feel dizzy; weird!
One of the blood tests checked my testosterone levels (I am a male) and it came back really low. I was surprised because I work out 4 to 5 times a week and try to eat right. Although I am 38, so I am getting old. The doctor said he wanted me to start getting testosterone injections, which I am concerned about. The endocrinologist doesnāt think the low testosterone levels are causing my MAV symptoms. However, I have heard that migraines may be linked to hormonal changes especially in women. If migraines are truly linked to hormones, I am wondering if my low testosterone levels could be connected to my MAV. If so, perhaps my MAV episodes could be reduced by getting the injections. Have any of you had your hormone levels checked? Do you any of you have any insight on MAV and hormones, especially testosterone?
OMG you sound like me with the driving. Im in menopause so i know i have low low hormones of all kinds even testosterone in women.
I get dizzy when i stop itās almost like an anxiety attack now itās happened off and on for 30 years but itās far worse now. I hate red lights!!! sometimes when im actually driving like 40 mph down the street i get dizzy too.
i have a male friend that takes some form of testo and it has helped him with his energy levels thats all i know about that. i guess you have to be monitored when they do that like when women take hormone creams and stuff.
so you have MaV probably huh? I guess i do too but only by the symptoms that i have - im still trying to get courage to take the antidepressants
OMG you sound like me with the driving. Im in menopause so i know i have low low hormones of all kinds even testosterone in women.
I get dizzy when i stop itās almost like an anxiety attack now itās happened off and on for 30 years but itās far worse now. I hate red lights!!! sometimes when im actually driving like 40 mph down the street i get dizzy too.
i have a male friend that takes some form of testo and it has helped him with his energy levels thats all i know about that. i guess you have to be monitored when they do that like when women take hormone creams and stuff.
so you have MaV probably huh? I guess i do too but only by the symptoms that i have - im still trying to get courage to take the antidepressants
do you take anything for your MaV?
chris
ā End quote
Hi Chris, yea the driving thing is bizzare! Perhaps the answer to a happier life is taking very long road trips as often as possible. The doctors have prescribed Topomax, but I havenāt taken it yet. I really want to try to see if I can identify any food triggers and subsequently eliminate them from my diet. If that doesnāt significantly reduce my symptoms, I think I will try Topomax even though I am concerned about the side effects. I hate to take medicine, but I hate living like this. If you decide to try any antidepressants or other medicines, I would really like to know how it works out for youā¦
wow amazing you sound a lot like me. this illness is a trip thatās for sure. I have a lot of anxiety thatās why they want to put me on meds. i take valium off and on and never in my wildest dreams thought iād take anything like that.
i canāt figure out my food allergies. I read that there are some triggers one plae and others in another place. i guess Heal Your Headache book has the best list to follow.
i just posted about food triggers and i think that list is way too much. i wouldnāt have anything to eat. i gave up things i thought were typial migraine triggers for the most part but not all and then i read another list that shows things i still eat that i thought were safe. it seems hard to control this stuff.
hang in there. I understand the anxiety and depression thatās for sure. Lots of good people here will respond to you iām sure.
Personally, Iām skeptical about the testosterone thing because that was the premise of another program I was on 2 years ago (Dzugan) which ended up being a complete failure for me and two others. But thatās a sample size of three so who knows.
Very good that you have zeroed in on this within 10 weeks! Thatās almost a miracle ā¦ so many go years without knowing. Sounds like youāre bang on the right track though and already realise that Meniereās is very unlikely given the prevalence of the disease (2 in 1000) and your obvious light sensitivity.
oh wow i just realized that you said ten weeks that is amazing like Scott said. iāve been sick 30 years off and on and still not positive but MaV looking pretty positive.
I feel SO much better in the car too!!! Iāve had this for 9 weeks straight and am very grateful that I got a quick diagnosis compared to some of you (well, I had this since I was 11 years old, I am now 29, but the dizzy attacks were nothing close to my latest one)
I just started driving and noticed the same thing! Iām dizzy at the light and am so thankful to be moving when itās green. Mine is definitely horomonal (Iām female) so wouldnāt be surprised if testosterone was involved in some shape or form for you. I just stopped nursing to see if my hormones would balance out and I think that my dizziness is starting to get a little betterā¦that said Iām still dizzy but there are times that Iām not so rocky.
This is an excellent site to find all sorts of information and educate yourself!
Chris, it makes me sad when I read that you have experienced this for 30 years. Obviously you have developed some sort of good coping mechanisms to survive this long without medication. I think I would have gone insane if my symptoms continued unabated for that long. I really hope I donāt have to go 30 years before I get some kind of relief. As demented as it sounds, I am just glad there are other people that have experienced what I have, because I thought I was going crazy!
Personally, Iām skeptical about the testosterone thing because that was the premise of another program I was on 2 years ago (Dzugan) which ended up being a complete failure for me and two others. But thatās a sample size of three so who knows.
Very good that you have zeroed in on this within 10 weeks! Thatās almost a miracle ā¦ so many go years without knowing. Sounds like youāre bang on the right track though and already realise that Meniereās is very unlikely given the prevalence of the disease (2 in 1000) and your obvious light sensitivity.
Best ā¦ Scott 8)
ā End quote
Scott, I really appreciate your reply, I need all of the insight that I can get right now. Actually my testosterone levels werenāt quoted in mmol. They were quoted in ng/dL units. Based on your linked chart it looks like ng/dL is the conversion rate from the mmol. Anyway, my total testosterone was 269 and free testosterone was 6.6. Based on your chart, you can see that the average for my age(38) is 668 total testosterone and 10.3 free testosterone. Basically I have the testosterone level of somebody in their 70ās or 80ās and I am only 38. Which really confuses me because I do weight training 4 to 5 times a week and eat enough protein. I am really curious about the Dzugan program you were on. As part of the program did they check your testosterone level? If so, what were your results? Did you get testosterone injections or a patch? Did they also check other hormones like estrogen, cortisol and prolactin levels? I really donāt know what to think about migraines and hormone imbalances, but it seems that there is a strong link with women migraine sufferers. If it happens with women, perhaps it is possible with men as well. Even though low testosterone levels may not be the cause of my MAV, I am hoping I will feel at least a little better if I boosted mine to healthier range.
interesting post. I think a lot of mine could be hormonal since i usually got dizzier around that time of the month but mine is mostly allergies (my theory) because thatās how this whole things started - spring/fall every year got really bad but not itās getting bad in the summer and sometimes part of the winter too.
that is so strange about the driving how some of us have that. do you guys still drive? I didnāt for a while but am starting to again just trying to get used to it if i feel really uncomfortable then i turn around and go home. I mostly just drive bak and forth to work but this past Friday i felt pretty good - got my hair done and drove to the grocery store like it was a normal day - it is so strange how this illness affects us
ilovesalem - are you adjusting to the lex and is it helping yet?>
Kookoo i hope you get to the bottom of this and figure out what your triggers are too. iām still not sure what food triggers i have but i know i donāt have any hormones left in me :lol:
Hi Ryan,
Iāve been wondering the same of late.
Dr put me on hornone therapy last week and itās helped my condition.
As Scott was saying on another post, other illnesses can and will trigger or exacerbate a person with migraine genes.
Many of us here become much dizzier/migraineous during viruses, colds, womens time of the month/menopause, and infections.
Seems our brains just cant take the extra crap going on in our bodies.
your very lucky to have caught this testosterone thing in time.
Iām sorry you are so unwell, Iām sure you will find some wonderful people here who will lend a kind ear and lots of advice.
best
jen
Iām no expert on testosterone with this thing but from a female perspective, most of the problems we have with hormonal exacerbation of MAV symptoms are due to hormonal fluctuations, for example rapidly falling oestrogen levels prior to menstrual periods or hormonal changes at menopause, rather than steady state high or low hormone levels. After all, elderly men have much lower levels of testosterone but are a group that has a very low incidence of migraine.
Having said that however, there are a few studies out there making a possible link between testosterone and cluster headaches so although no link has been proved with migraine, I donāt think enough research has been done into this area to be able to say definitively one way or another.
Even if not related to the MAV, significantly low testosterone levels do have other effects over a period of time (fatigue, depression, loss of libido, reduced fertility, genital atrophy etc) and so if youāre being advised to top up your levels then it may be worth considering for these reasons alone, and if it helps the MAV then that can only be a bonus.
just seems so sad that you are going through this at such a young age. Iāve heard of ManOpause where the levels drop down but i donāt think itās as bad as what women go through but iām not sure it may be for some men.
wow loss of libido and genital atrophy - that sounds depressing - i know that happens for women but didnāt know it did in men too. menopause symptoms include horrible fatigue and depression and anxiety and genital atrophy, and also read headaches i never used to get them except during allergy season and now itās all the time.
I really appreciate your kind words and great insight. It is interesting that elderly men and women have less migraines. You would think that my low levels may even reduce migraines since I am comparable to an elderly man. However, if I have high levels of all of the other hormones like estrogen, cortisol, FSH, LH, DHEA and low levels of testosterone, perhaps it truly causes a hormone imbalance. I think elderly men have a proportionate amount of loss in hormones or in other words they are still balanced. My isnāt proportionate, so perhaps my brain is freaking out. I probably have no idea what I am talking about and am just speculating. I will probably start taking the testosterone injections and will keep you all posted as to how it works outā¦
Ryan,
Has the testosterone therapy helped your condition? Iām experiencing similar symptoms, and just this week my doctor has discovered an extremely low testosterone level. Let me know how your situation is working out. Iām looking for hope.
-RJ
A couple of months ago I decided to wait and see if I could get my testosterone levels up naturally. In addition, I wanted to a little more time to research testosterone and migraines. Well, a little over a week ago I went and had my testoterone levels checked again along with several other hormones. I get the results and meet with my doctor this Thursday. If my testosterone levels are still low, I will immediately start testosterone replacement therapy. If you have any questions about the different hormones I tested and results, I would be happy to discuss them with you. If you care to know, I will let you know what happens Thursday and if I start testosterone replacement therapy.
I suffer from low T as well as menopause. Iām 40 now and it all started about 5 years ago. Several tests and a divorce later I discovered that my Testosterone was nearly non existent. I now receive the pellet and it is a miracle for me. All of my symptoms ( dizziness, fatigue, sleeplessness weight gain all disappeared. The only thing I still have is hot flashes.
The doctors have prescribed Topomax, but I havenāt taken it yet. I really want to try to see if I can identify any food triggers and subsequently eliminate them from my diet. If that doesnāt significantly reduce my symptoms, I think I will try Topomax even though I am concerned about the side effects. I hate to take medicine, but I hate living like this. If you decide to try any antidepressants or other medicines, I would really like to know how it works out for youā¦
Which really confuses me because I do weight training 4 to 5 times a week and eat enough protein. I am really curious about the Dzugan program you were on. As part of the program did they check your testosterone level? If so, what were your results? Did you get testosterone injections or a patch? Did they also check other hormones like estrogen, cortisol and prolactin levels? I really donāt know what to think about migraines and hormone imbalances, but it seems that there is a strong link with women migraine sufferers. If it happens with women, perhaps it is possible with men as well. Even though low testosterone levels may not be the cause of my MAV, I am hoping I will feel at least a little better if I boosted mine to healthier range.