Any news about SPI 1005?

Today is my 90th and last day of the first disbursement of drug. No change or improvement yet. I go to the clinic Friday to get my second batch. I am going to ask them about the empty stomach dosing and what others are doing in the study there.

 

I'm in Canada so I might be in the same situation if this becomes a viable treatment. Either way I'll save my money and buy it from the US if need be. It seems to be working for me. I'm cautious though and hopeful. I go up and down but my worse days aren't as bad and my good days are better so the general trend is good.

 

I picked up my second three month supply of my drugs today. I start back to taking them tomorrow. I asked my clinic coordinator about taking the drug one to two hours before eating. She told me it is recommended but not required. She also told me many of the other people in the trial at my clinic are a few weeks ahead of me, and when they return for their follow up they will have the most data so far on how well it is working.

 

I think I might hang it up. Getting close to three weeks of constant dizziness. Not bad. More annoying. I can't turn my head fast. Or get up (or sit down) fast. I feel like I have to do everything in slow motion.

 

Did you have any of this before the drug ? I have more tinnitus and fullness than before but am sticking it out. Day 100 on it today.

I am afraid of what I might do if I lose all hope ...............

 

Nope. I haven't had a significant anything since last November, until a week after starting the drug. Tinnitus and fullness are "normal". I've been on the JOH regimen for over a year now, among other things so I attribute my stabilized hearing and fullness to that. So yeah. It's a bit fo a PITA. When the cure is as bad as the disease. Well not AS bad. But pretty miserable. At least when I had Meniere's attacks, they would come and go. Not be constant.

 

Yes bman, I am very disappointed in the drug, thought it might not work but never figured it would make things worse.

 

I'm sorry to her that it's not working out well for you. I tend to theorize, but I wonder if the increased dizziness is related to the drug decreasing inflammation and your body is reacting to that. In other words, just as dizziness and vertigo was triggered as a symptom of inflammation and nerve damage, the reversal is triggering it as well. In the end I don't know, it's just a theory.

I've had some mild dizziness at times since starting the drug, but nothing major that would prevent me from taking it.

 

Here's my guess at a possibility, Bazooka. Dizziness from moving your head fast is more of a symptom of BPPV than Meniere's. Because we have MD, we attribute all dizziness to it, however, in my case, I was having severe attacks but it just didn't feel like the vertigo I was used to with MD. It felt more related to head movement.

So, I called around looking for a Physio Therapist who was proficient in treating BPPV and I'll be damned if it didn't help a lot! I went for 3 treatments but really I only needed two. Haven't had an attack since.

 

I've been tested for BPPV a couple of times. Not it. Plus I don't attribute the dizziness to Meniere's. I know what THAT feels like. I am attributing this to the drug. Like I said, nothing. Nada. Zip. Zero attacks, episodes, whatever, since November. Then a week after I start this new drug, suddenly I'm dizzy.

 

Oh, yeah, ok, I understand. I was hoping. Have you spoken to the people providing the drug about it?

 

I am now past the first month with the real drug. Started 7/11. This is what I have experienced:
First week-dizziness on occasion.
2nd & 3rd week- dizziness less. Gone by end of 3rd week. Back to working in shop.
4th week- all good. Driving some.
Bad thunderstorms last 3 days. 2 evenings ago, felt the stiffness of neck when moving side to side with slow motion effect. Tinnitis louder. Popped a meclizine and all good. T-storms have been my new chaos this year.
Yesterday bad storms and put on my new Relief Band Sport, and I worked all day tearing out carpet for wife's new home office. No issues. Could I feel the atmospheric change? Absolutely. Did it negatively effect my day? Nope! I think the relief band helped with some of that. (See below)
So, my conclusion of first month: An improvement with M.D. symptoms. My ear is slowly improving with hearing. I wear headphones at night and can now start to hear people talking in bad ear. This is on low volume setting. No vertigo, and other than the small dizzy spell a few nights ago, all good. My ear will pop on occasion which it never did prior to drug.
Also, Friends from church loaned me there relief band for a week to try. It works for me in regards to motion sickness, anxiety and balance. Sends electric pulse to brain that calms and relaxes nerves. Was a blessing to have been able to try it first. Wife picked mine up yesterday
Do I feel the drug is working? Still early in the game, but I feel it is starting to work. No more ear sensitivity and hearing slightly improving. Meniere's is a strange thing. Sometimes things just change for no reason. I am staying optimistic. We shall see what the next month is like. You are ALL in my prayers for recovery from this chaos called Meniere's.

 

Ivan,
Agree on saving the good ear! I do not expect miracles from this drug. I am hoping that it can maintain a bit of normalcy down the road. If I can put the vertigo to bed (priority #1) and minimize dizziness and tinnitis, that would be awesome! I am still early in this drug experiment, so we shall see. If I was to score how I am feeling with 10 being excellent and 1 being horrible, I'd say I'm running at a 5 or 6 the last week. Not great, but functioning ok. My ear issues fluctuate, so I'm still cautiousely optimistic.
We shall see where I'm at at the 3 month mark. If all goes well with the drug, hopefully it gets approval sooner than later. Stay positive my friend and God bless.

 

This sounds similar to what I experienced. Except it took about a week for the dizziness to set in. But I do feel better now after several weeks. But also like you, I'm not 100%. I actually felt better BEFORE I started the drug. Maybe this is just the initial reaction? Who knows. I just want to get back to working out.

 

Argh.... Woke up this morning and storm clouds brewing to the South. Already feeling it. I felt more dizziness earlier on the drug after taking it. Not anymore. Was it the drug? Body getting used to it now? Could be ...
I went almost 2 years in remission till last November. While good, I hiked the river fishing, hunting ducks and fishing in my buddy's boat. Last November had a vertigo attack while hunting. Not fun. Been off and on chaos since. I have tested positive for HSV and a few food allergies. Nothing crazy.
Tried eating vestibular migraine diet as well as viral diet (JOH stuff) and not really a change. As I said before, I feel a change and dizziness much less frequent. Still a ways off before hiking the river, but getting through the day. Again, the people that have seen success were 90+ days on the real drug before seeing significant change. So says DaVinci tech as well as hearing it from a few on social media.
You mention working out, I have an elliptical I use every morning. Yesterday I wore the relief band and felt good after workout. This morning I intentionally kept it turned off and definitely a little motion sickness. Not bad but could feel it. It will be powered on tomorrow! Hahaha
God bless and stay strong!

 

Yes. I used to work out every morning. weights on M/W/F and rowing on T/Th. But the last couple of weeks I just haven't been up to moving and bobbing and doing normal stuff that happens while I work out. I really feel like I have to get back into it. Might try to start back Monday. On that note, what is the relief band you use? If you mentioned it before, I apologize. I didn't see it.

 

Reliefband
I purchased the relief band sport as it is waterproof. You can swim with it. I am a taxidermist and needed something I could wear in shop. Paid $199.00 at West Marine .
Amazon has them as well. There is another brand emeterm I think. Heard customer support was bad and not as good, so went with Relief band. I took the truck down to the wetlands yesterday to cut reeds. When I have M.D. chaos, banging over dirt roads causes me to get motion sickness. Not puking, like being on rough water in a small boat. Wearing the band kept that from happening. Actually felt normal for awhile. I wear it on elliptical as well. Do not recommend getting the cheap stuff that are not battery powered. Not the same. You can P.M. me if you got questions.

 

Thanks for the info. Will check into it.