Hi Diane,
Yes! Weather can be a big factor on how my day goes. Low pressure can really undo me. I'm curious, what do you mean when you say Steve's numbers are running between 6 and 8 out of 10? Is that his way to let you know how he is feeling? I think it is wonderful that you are here to help him. It must be very hard with the migraines and spinal pressure on top of the MD symptoms.
I don't know how to deal with the weather other than just realizing it is going to be one of those days again. I hope someone else has some advice for you. One good thing about the weather is.... it will change.
Welcome to the group.
God's blessings on your day.

yes I to suffer according to the weather when a storm is approaching I get intense pressure and ringing in my left ear when the rain starts for the most part I feel great , my best days are cool rainy days guess I have to move to Seattle or Portland.

YES! I always get a vertigo attacks always before a thunder rain storm , I start getting off balance and nauseous always before storms and feel better after it starts .This summer humidity has made me 100 times worse than I was during the winter .

Diane,
Weather has always been my biggest trigger. In the beginning of MD I would get absolutely disabling attacks--vertigo, throwing up, hanging on the bed because I thought I was falling, and unable to walk without assistance. After my surgeries, the episodes changed to just dizziness, imbalance, and eye pain / sensitivity. I could predict the weather better than the guy on tv. ANY change in pressure triggers an episode--rain, storm, or even snow. When I first was figuring out that the weather played a part, I bought an old fashioned storm barometer and I could actually see that when the pressure in the tubes was even, I felt good. When one of them went up, an episode always followed. It was a good visual for me to predict when a bad day was coming.

I just had a series of three steroid injections into the eardrum, and I can hardly believe it--but I have made it through two thunderstorms without an episode! That's a first for me in five years, so I'm praying that the injections continue to work. Just thought I'd mention it in case your hubby hasn't tried it yet. (It didn't work for me five years ago, but has been a miracle this time.)

God bless. We'd love to hear updates on Steve's condition as things progress.

Marlene

Marleneg, My injections worked for about 4 months, then a few weeks ago I started feeling pretty rough again. Just thought I'd share that since you just had them. I hope yours work better though!

Hi, I wrote out a reply and when I hit enter...the internet went out and lost it. It's been that sort of day. Rachel, the hospitals/doctors always ask what his pain level is. 0 being none and 10 being the worst pain you have ever experienced. Before his VP shunt in his head his pain was running 8 and 9. He felt his head was going to explode. The shunt has reduced that to 5 and 6 or some good days 3 and 4. Things were tolerable mid October to mid February he was having tolerable days with some MD days knocking him off his feet. But when mid February came the MD became extremely active. Raleigh, NC has been having a LOT of stormy unstable weather for months. This past week has been one or more storms a day. Very unusual. So he has be wobbling and falling into walls, the bed, chairs ...when not in bed. The noise in BOTH ears is so very loud. He takes valium to help his brain cope with all the activity. He has an extremely long list of medicines he had sensitivity or allergic reactions to. I shared with him about the replies and told him there has to be hundreds more that are dealing with this. It does help to not feel alone. Marlene....what do the tubes being at the same level represent in today's terms? Holding Steady?? Thank you all so very much for sharing. It has been an emotionally rough day and getting help from those that understand is such a blessing.

Welcome Diane - Yes, weather can be a factor. I was the barometric pressure so I can prepare but my head has been able to tell the pressure without the official readings for years! There isn't much we can do about the weather but knowing the impact helps to prepare and forecasts, although not always accurate can be of assistance to me in getting a strategy in place. I'm glad you are taking an interest for Steve, the support is much appreciated by MD sufferers. Best of luck.

I am blessed to tears reading your statements. And guess what? I have been reading them aloud to Steve and he is UP and joking around and we are going to the bank and grocery store. Yesterday was my birthday and the only Birthday wish I had was that he feel good enough to be up.. he actually was in bed the ENTIRE day except for eating quick meals (diabetic...so they are a must) This is the best I have seen him up in OVER A WEEK I know you can rejoice with me in this!!!! Each of you brought forth a piece of encouragement. Steve says his ENT (who has invented certain things to help in surgery) needs to invent a shunt that will drain the sac when it gets full. He did carve out the bone behind the each ear to give the sack more room to expand. That helped a lot. Off to enjoy my hubby while I can. I try to make his good days as happy as possible to help offset the bad days. (his is disabled so we don't have to deal with work, and I am home with him) Ta Ta

Hi Diane

Welcome to the group. I see you are in Raleigh, was wondering who you folks see for ENT. I used to be a patient of David Kaylie over at Duke. I didn't know if that was where you were getting treatment. Sounds like hubbie has some real serious medical issues.

God bless

Rich

Diane,
I hope you and Steve have a wonderful day. Sometimes when I am having a worse day, I lie down with a good book. My husband sometimes will get his good book and lie down next to me. It's not much, but he is still doing something with me. That does make a positive difference.
I hope your weather settles down so life can too.

Rich - - Yes, Dr. Kaylie is Steve's ENT.
Rachel - When Steve is overwhelmed I will crawl into bed and hold him and gentle rub his arm or back so his body and mind can feel something positive and comforting. If he is heading towards an anxiety attack/melt down...I will also gently talk about something else to draw his thoughts out of his head. Which is the best thing for anxiety attacks. He will read if he can concentrate on what he is reading. If not that he plays some sort of game on his tablet. I like the idea of getting into bed during the day time and reading just to be near him. Thanks for the suggestion. Just today I kept running in with some silly jokes/comments that were being shared in a movie. He was awake and playing games. I laughingly told him, "So, do we move the bed into the living room or the TV into the bedroom". We are living in a small apartment 620 sq. ft. kitchen/living room with bedroom / bath off the living room. So I'm like 12 feet from my chair to the bed.

Diane, you are an amazing, supportive partner for your husband! He couldn't have a better advocate!

To answer your question about the tubes in the storm glass barometer--when they are even, the barometric pressure is steady. When a storm is coming the water in one of them will rise to the point of the dripping out the top and the other will fall to nearly empty. It gave me a visual in the beginning to understand how much the weather played a part in my episodes.

Please tell Steve we understand how overwhelming it can be. There have been plenty of days when I would go to work and last only an hour or two before I had to go home and would just lay in the bed and cry myself to sleep. If the dang disease would relent once in a while--but it never lets up--that's what wears me down emotionally as much as physically. It sounds Steve has had the same surgery that I had. Tell him not to give up hope. I hit bottom a few months ago--physically, emotionally, and spiritually-- and was encouraged to go on disability, but I'm a different person after the last set of injections. I certainly realize it might not last, but I'll take any relief I can get and I plan to enjoy every minute while it lasts! As long as God is in control, there is always hope! You and Steve will be in my prayers.

God bless,
Marlene

Diane

I was treated by Dr Kaylie for an Acoustic Neuroma removal about 8 years ago when he was at Vanderbilt in Tennessee. He did a great job however I did loose my hearing in that side, it was a 50/50 deal, since that time I got MD in my other ear.

I cant stress how important it is to have an understanding and supportive spouse. I do not know what I would do without her. She reads me like a book and overrides me when I think I should sit instead of pushing myself to the point of disaster (Hay, I'm a guy, what would your expect!). She gets me out, we have fun and laugh a lot. Our over riding thing at our house is to have peace and help each other as much as possible. I read somewhere that the number one key to a happy marriage is equal division of labor around the house. I kick in the best I can, she works all day and I do not want her over whelmed when she gets home. I never get everything done but little by little I have learned to help out. I do this out of love and respect for her and our happiness. Keep that in mind as you move forward. A truly healthy person has lots of purpose and love in life. MD threatens to take this away, you have to fight to get it back, it takes a long time to do so.

God bless

Rich

Got this backwards, she make me sit when "I push myself to disaster"LOL that MD for ya!

(From Last post)

I cant stress how important it is to have an understanding and supportive spouse. I do not know what I would do without her. She reads me like a book and overrides me when I think I should sit instead of pushing myself to the point of disaster (Hay, I'm a guy, what would your expect!).