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Time to get Serious.

Discussion in 'Your Living Room' started by Onedayatatime, Jun 20, 2019.

  1. Bonlyn

    Bonlyn Active Member

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    So glad I just read this post. After being on the migraine restrictive diet for almost 3 months and still having dizziness/ vertigo at a milder but still dibilitating level, my neurologist has recommended I take verapamil or topamax. I have been unsure which would be better...or really not as bad. Since I read your post will try the verapamil first. Thank you so much for posting. I hope this is the cure for you. Best to you Bonnie
     
  2. Onedayatatime

    Onedayatatime Active Member

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    It appears that treating for MAV these past 4 weeks has not altered my regular flare cycle. I had hoped it would after having a pretty good month. That ended with increasing pressure, and a nasty vertigo event Sunday and another yesterday. Im still dizzy today as I type.

    Sorry Bonnie.
     
  3. Svines

    Svines Member

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    Perhaps your doctor will want to change your meds. I understand there are several different ones that they try for the vestibular migraines.
     
  4. June-

    June- Well-Known Member

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    Sorry to hear that. Might be an opportunity to look at that time period and see if any trigger can be identified.
     
  5. Onedayatatime

    Onedayatatime Active Member

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    My log shows a cyclical pattern that I knew existed before i started logging. While the cycle has some variation, it seems that I am on a monthly flare cycle. I first notice a buildup of pressure in my ear and behind my eyes. This occurs over 3-5 days. Next I experience a day or two of dizzy on top of the pressure. Next, with very little notice, Whammo, the carnival ride begins. My favorite place during these events is on the floor by the A/C vent as it provides cooling for a fever like symptom. After the vertigo event, I used to get a headache with a wet feeling in my ear and then I would experience a quiet period with few symptoms. The past few months, the peak of the flare seems to have extended out for days. Now I have several days of vertigo events and dizziness before I enter the quiet period.

    I have never been able to find a trigger (food, booze or caff). Originally, the loso seemed to help so I have continued that along with JOH, even though I can no longer claim they provide relief. I continue because I'm afraid to stop fearing worsening symptoms. I have gone no caffeine to low caff, to full caff without seeing any change. The vertigo occurs at different times of the day. For sure, the events are always preceded by a build-up of pressure. That is 100%.

    I see Doc in a week. I am afraid he will simply want to change the med from the verapamil I have been on. I want this crap over. Now, I don't even have hope that a laby will fix it. Stay tuned to more news from my personal Hotel California.
     
  6. PleaseNoDizzy

    PleaseNoDizzy Member

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    This may be 100% off base because I don't know your gender, but it strikes me could this be related to/in synch with menstrual cycle? If you are a male, I am soooo sorry, my greatest apologies.

    We have had suspicions all along that MAV is at play for me too, and my symptoms seem a bit more under control when I went back on BCP. Not cured by any means but it seems to make things a bit more steady and not having the peaks of crazy I had been having.
     
  7. Bonlyn

    Bonlyn Active Member

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    Just wondering if you followed the dietary restrictions from the book Heal Your Headache By Buchholz for 3 months..or if you read the book.? That is what I am trying right now ...I will admit the dizziness attacks have not gone away but I feel have diminished and the intensity is not as severe.
    So according to this book if eliminating all migraine trigger foods doesn't work to try one of the drugs he recommends. There are four types of drugs. Maybe you would respond better to Topamax as opposed to the calcium channel blocker you were prescribed.
    Also the weather affects vestibular migraines...was it very hot or rainy during your last attack?
    I am so sorry this drug may not have worked for you, but do not lose hope and keep us posted. Bonnie
     
  8. Onedayatatime

    Onedayatatime Active Member

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    Thanks Bonnie. The migraine thing is new for me. I will read Buchholz. I'm laughing about your question for hot or rainy as it is almost August in Illinois. Hot is the norm as is humid. I don't believe this affects my flare cycle but will watch. At this point all I know Verapamil does not seem to work.

    At least for now, the dizzy has faded.
     
  9. Onedayatatime

    Onedayatatime Active Member

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    Exchanged emails with doc. He is not discouraged (i am). Doc says we are not done with the MAV bunny trail. I started Buchholz's diet yesterday. Looks like I will be losing some weight as there is very little I can eat that I used to eat. I'll give it 45 days to see if I notice any positive change. Giving up Peanut M&M's is extremely difficult. I love those little guys.
     
  10. Bonlyn

    Bonlyn Active Member

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    I hope it helps O.D. A .A T!

    I totally understand how you feel about the peanuts and so many other things on the migraine list. When I feel I might cave on something I ask myself " is this work bringing on a vertigo attack?" Haha, usually the answer is no.
    Sad to say my doctor would not prescribe the verapamil for me, they so seem to want me to take Topamax, but I have hope to try with one more doctor.
    I still feel encouraged that you had posted for almost a month you felt better. That has to mean something with the verapamil ( I hope.)
    When it gets especially hot and humid and before and during a rain storm, I feel worse...and obviously can not control during these summer months.

    Visit the website link The Dizzy Cook - Diet and lifestyle blog for migraine and vestibular migraine, she has some good links and recipes. Stay encouraged and connected. Bonnie
     
  11. Onedayatatime

    Onedayatatime Active Member

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    Thanks Bonnie. 4 weeks is my typical flare cycle. Recently the bad part of the cycle has gotten longer in duration. Now I may have up to 3 vertigo attacks in fairly quick succession before the flare ramps down to a quiet time. I think I felt better during the previous ramp down period because I had hope we finally found the problem. Definitely doing more research. DW is jumping into it as well as she is the cook of the household. Thank you for the reference.
     
  12. Onedayatatime

    Onedayatatime Active Member

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    PND, I just re-read this and am laughing my butt off. At this point in my life, I would not be surprised if the doctors advised me of this as my new affliction. Yes I am male.
     
  13. Saera

    Saera Active Member

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    Do you have hearing loss? If so I wouldn’t give up on the laby hope.
     
  14. Onedayatatime

    Onedayatatime Active Member

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    Yep, my affected ear is pretty much dead with regards to hearing.

    Saw Doc today. We discussed Laby and Gent. He repeated the fact that neither of these will relieve MAV related vertigo. He wants to pursue MAV for a longer period to rule it out. So, we are increasing the verapamil dose for a month. If that no worky, we try Topomax. If that no worky, he wants to see if Serc has any affect at all on the Menieres. He wants to do them 1 at a time so we are talking months. :mad:
     
  15. Bonlyn

    Bonlyn Active Member

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    Oh I need a DW! Love to have someone cook for me while I am a dizzy mess. Haha. (But the hubby can make me toast and bring me Apple sauce when needed...and drives me to appts-- so he is a keeper.)
    Even though I try to follow the diet as best as I can, the humid weather has really been messing with me..also shot down by two doctors in letting me try the verapamil, one more chance with a Dr tomorrow. Hope you are stabilizing. Bonnie
     
  16. Bonlyn

    Bonlyn Active Member

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    Well sounds hopeful your doctor has a plan. Sadly, no such thing as immediate gratification with this disorder. Hope the verapamil works, but it does seem the neurologists love topamax, so there is a plan b for you. Keep us posted. Bonnie
     
  17. Saera

    Saera Active Member

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    How do we rule in or out MAV? I suppose that’s what they are trying to do. Frustrating I am sure. Big hugs. I hope the verapamil does it.
     
  18. Onedayatatime

    Onedayatatime Active Member

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    There is no test for it. Need to treat and do the Buchholz diet and see if there is a positive response. It was the same deal with antivirals. Had to try them for 3 months to see if they had a positive affect. For me, they did not.
     
  19. Onedayatatime

    Onedayatatime Active Member

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    Another month is gone. So I figure an update is warranted. It's been a good month on the increased dose of Verapamil. No vertigo for 5 weeks, no dizzy for 3 weeks. We are heading to the Northwoods to celebrate our 25 year anniversary. I get to fish for 5 days and I have Muskie fish on the brain. Upgraded equipment and I'm ready to go for it. I'm a bit worried about a flare, but oh well. I can also report 10 lbs lost from the Buchholz diet. Weight loss was not part of the plan, but was a result of giving up all the goodies I like so well.
     
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  20. Clare

    Clare Active Member

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    Kudos to you for sticking with a diet and being systematic about trying treatments to find what works. I hope you get a HUGE muskie, and/or lots of tasty northern pike, walleye, bass or trout. You could have a flare in a lonely room at home, or in a boat on a lake in the wilderness. Which would you prefer? Have a great time!
     
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