New here,have questions PLEASE

Hello everyone,
I am so happy to have found this place.
I self diagnosed myself with MAV. I had all the tests. I am 33 with three kids. I have good days and bad days.
But as of late, more bad day. I am scheduled to see a neurotologist specialising in MAV. I was diagnosed with BPPV but after seeing an ENT she doesn’t think I have that because I am constantly dizzy. I wake up with spins at times too.

My question is I have this pressure on the top of my head and at times it radiates to the sides or the back. Followed by unbalance, fatigue and dizziness. Oh yeah, panic! I am medication sensitive. I hate taking meds in fear of the side effects and it seems mostly everything causes dizziness. But what is really freaky is the pressure in my head with dizziness. It’s worse around my monthly too.
I’m sorry I know this question has been asked. I just have problems with scanning through all the previous posts. That gives me a headache.
I’m suffering and at the end of my rope and scared.

My symptoms are cluster headaches and pressure…anyone else?
panic anxiety
tired out the blue
dizziness
vertigo when waking up sometimes
neck pain
heavy head
feeling like I’m going to fall but dont
rocking and swaying
tingling feeling in my head
weak hands
shaky

What are the best meds please you guys? Talk to me here. I am so depresed and ready to clock out!

Hi dizzybabe,

Yes, you certainly sound like a dead-ringer for MAV. And you’re very clever to have worked it out on your own too … even most specialists don’t see it! Welcome to this board and vey sorry to hear of your suffering with this junk.

The first step is to make lifestyle changes immediately. Keep a diary and try to identify triggers. I’d grab a copy of “The Migraine Brain” by Carolyn Bernstein. She runs through how to do this among others. If lifestyle changes don’t help enough then you’ll need a med. Given your depressed state I’d look at either starting with a tricyclic antidepressant or an SSRI. Nortriptyline is a favourite by Steve Rauch. Have a look at the “sticky” thread above for his recommendations. Effexor (SNRI) is also used by Hain. It really is a process of trial and error.

Good luck and let us know how you get on.

Best … Scott 8)

Welcome to the board though I am sorry you are going through this illness like the rest of us here.

I would suggest you get the book “Heal Your Headache” and “The Migraine Brain” both have good points in them that may or may not be of benefit to you as you go on this journey. Both are on Amazon so you can order them there at a reduced price.

The things I can say have benefited me are in the following"

  1. Following the migraine diet…( I know it has not worked for some but for me it did make a big difference) You have to be very strict with it but to me it was worth it as ill as I was when I started it back in 2008.

  2. Stay on a strict sleep pattern, of all the things I have done this has made the biggest difference to me. I go to bed at the same time each night and get up at the same time each morning. (within 30 minute) on either side.

  3. Try and get 30 minutes exercise each day…this is the hardest for me to do as it seems to set off my symptoms. But all that I have read and the doctors all say this is important.

  4. Drink plenty of water…that is all I drink other than a bit of juice during the day. About 60 ounces a day is what I consume.

  5. Find a doctor that is familiar with MAV , and be prepared they all seem to address this from diff perspectives. You have to figure out what is going to work best for you. Find someone you feel comfortable with and have confidence in treating you and helping you on this journey.

  6. Do not push yourself too much …your body will let you know when you have to slow down and you must or you will most likely pay the price (or that is how it works for me).

  7. Realize there are others in the same boat and we are here to listen and support you and offer what has worked for us though not the same thing that works for me or others may work for you. It is trial and error.

I have tried some of the meds to this point I have been unable to tolerate any of them other than I take a very small dose of Valium everyday. 2mg it helps me with the anxiety and rocking sensation …

Some people find they have to wear sunglasses because of the lights, others have to stay away from scents and chemical smells (HUGE trigger for me) I carry a mask with me everywhere I go.

It means changes until you get the proper treatment that works and even then IMO without some lifestyle changes the meds alone will not get you to 100% neither will the lifestyle changes by themselves in most cases. It is a journey welcome aboard and we are all on the same train right now.

I understand your med sensitivity as most with this fall into that category, that is why I would read the books ant try the lifestyle changes first and then move onto the medications.

Like Scott said keep a journal of everything so that you can let the doctor know when you see them, plus write down questions that you may want to ask.

Also have you had any blood work done? Some have found that they are low in Vit D and may need to supplement , plus I just found out I am B12 deficient and think this may be causing some of my tingling and numbness.

Try to learn to calm yourself as this was and has been the biggest issue I get so scared when one of these “attacks” hit but once you know what they are and have been checked for other health issues rest assured you will be okay.

We are here to be of support and we are all in this boat together. Read the success stories at the top many have found relief and are able to live their lives again.

You will be in my thoughts.
Timeless

Hello dizzybabe, yes, it’s a very scary place to be when you have MAV, particularly at first. I remember only too well how frightened I felt and how desperate for answers. So we all understand how you’re feeling and sympathise greatly. Timeless and Scott have posted some excellent ideas for you to consider and they would make a great start for you to begin your way out of MAV hell. I myself have had good success with the diet but have not found a med to suit yet and am not pursuing that route further at present.

I can relate to the head pressure - unfortunately it’s become the norm for me. Occasionally it might feel not so bad but it’s always there to some degree or another. Anxiety and panic were also bosom friends of mine for a long time and although I still get both from time to time, they are nowhere near as bad as they were and I can talk myself through them now and ride the storm. Most of the time anyway! I think the improvement there is partly due to diet and partly due to the passage of time.

I hope you find following the suggestions helpful and wish you well in trying to get better. Never be afraid to express any fears, concerns or questions here. We all understand and want to help.

Best wishes, Brenda

Hi dizzybabe:

I’m fairly new to this forum also having developed balance/dizzy/visual/coordination/speech/trigeminal nerve pain/migraine headache
symptoms all within the last 10 months. Before the headaches or the nerve pain started, I had the balance/dizzy probs for a few months

I went to an ENT for several inner ear tests and to a neurologist during this time. I also read this forum and some migraine books.
I started a strict migraine diet and followed a regular sleep schedule. About 2 months into this, my balance/dizzy probs dramatically
reduced, and I identified several triggers – foods, missed meals, missed sleep, certain lighting and certain smell.

However, then the real migraines came, but I’m still doing better now than a few months ago. With the start of the migraine (one w/ visual aura,
my neurologist started some preventative meds since he thinks it’s migraines – he previously thought it could be MS, but the mri came back negative.)

The neurotologist is the one to see, as he’ll help rule-out several things by ordering different blood tests and probably doing an MRI of head an IACs. Once he knows you have nothing serious (in the sense of being life-threatening), he’ll be able to focus in on treating migraines probably.

For the meds, your dr. will have to determine what he thinks you have, but my neurologist has over the months has prescribed me:

  1. Meclizine (saved me many times when the main problem was motion sickness w/ bad nausea; but also made me sick sometimes)
  2. Zofran for nausea (I’ve never taken)
  3. Zomig as a migraine abortive (I’ve never taken $270 for 12 pills, but insurance paid most)
  4. Zoloft (migraine preventative – took one 25mg dose and was dizzy and had nausea for 5 days)
  5. Amitriptyline (tried two 12.5 doses over two days – half what dr. wanted, got a bit nervous feeling and unusual heartbeats, so
    I stopped. Then I was sick for 2 days w/ some nausea and dizziness, like the Zoloft did. But, on the second
    day of the med, I actually began feeling better, but got concerned about the cardiac changes so stopped it)
  6. Klonopin (as needed for anxiety. I really felt like weak accepting this, but looking at my diary of symptoms, I saw that physical and/or
    mental stress preceded some of my worst attacks; but I did have the balance probs even w/out stress.)

Like you, I worry excessively about the side effects of meds, but most do make me dizzy and sick, so my worry is justified.
Also, being off-balance, having headaches, etc., for several months finally wears a person down and makes one concerned
about taking a med that will make it worse.

I’ve taken the Klonopin only twice (0.5mg/day). It helped me sleep, as did the amitriptyline, and made me less anxious.
I plan to take it for a 2-3 days, if I know something stressful is coming up.

Also, when I returned to my primary care physician with balance/motion sickness problems that didn’t go away after a month, he
prescibed Valium 5mg 3 times/day and an MRI. This was back in the beginning, and he said the Valium was for vestibular suppressant,
not anxiety. He thought I may have had an inner ear problem. From time to time, I’ve found a single 5mg dose has helped me for about
2 days. He only gave me 30, and I still have 11, so it’s not something I take regularly.

I see the neuro this Tuesday. He thinks I’ve been on the amitriptyline for 4 wks, but I’ll see what he says about the cardiac changes, and
subsequent nausea when I stopped it. It seemed to be a good one, unless it would have caused nausea if I continued it. It seems all these
meds, even the anxiolytics, make me feel sick. Good luck, and let us know what the neurotolgist says.

Dizzybabe, welcome to this site. I hope it helps you. You mention that your symptoms are worse around your “monthly”. Have you had your hormone levels checked? are you on birth control pills? Some of us on this site have MAV attributed to hormonal changes. I, myself, have MAV attributable to menopause, fluctuating hormone levels. Being a breast cancer survivor I cannot take any hormone supplements but possibly you could benefit from some type of hormone therapy, etc.
Good luck and let us know how you are progressing.

Joan

Hey Timeless,

Your suggestions are great for the new person. I could not have said better myself. Diet & Sleep are Super Important for me…but everything else you mentioned are important as well

Joe