First, I want to say, I’m not cured of anything. Nothing is gone completely. I still have all my Meniere’s, and it’s symptoms. I’m still deaf, with cochlear implants. I still have Migraines. I still have Cluster Headaches. I’m still Bipolar. I still have Fructose Malabsorption. I still have all of my chronic illnesses. I am still disabled I just don’t have some of the symptoms as severe as I did 3 months ago. Truthfully, I am living a life that I didn’t think was imaginable 3 months ago, and in this series I’ll talk about some of the reasons I now think it is possible.
There have been a number of things that have contributed to me feeling better and I think it’s time that I laid them all out there for you. I haven’t revealed everything before for a couple of reasons. One, I was afraid it was temporary and I still am, 3 months is still a relatively short amount of time to tell if these things are going to continue to work, and two, one of the things is something that could be dangerous (and really may stop working at any time)….let me explain.
I will explain the dangerous one first. This I wasn’t even sure I was going to talk about…but I think I should.
Remember how bad my headaches had gotten? The migraines wouldn’t go away, after the Botox had been working so well and suddenly it stopped working? I went for about 3 months of non-stop migraines. It was horrible!! I was put on steroids and had that severe vertigo attack and then was put on a different steroid to try to stop it….remember all that mess? Then I started getting cluster headaches. Remember? If you are a new reader you won’t remember that, but it happened…and then…
One night I had a bad set of cluster headaches and didn’t wake up the next day until 2:30pm. I woke up and my first thought was “OH NO! I haven’t taken my Diamox!” Diamox is the medication I take to control the Idiopathic Intracranial Hypertension (high cerebral spinal fluid pressure ). Without this medication I normally have an excruciating headache! However, I suddenly realized, I didn’t have a headache. For the first time in months, I didn’t have a headache. Note: NORMALLY, when I don’t take this medication, I would be screaming from the pain in my head. This day I did not have a headache.
I decided not to take it and see what happened. No headache. The next day. No headache. Days later, No headache.
Please forgive me for not telling you, but the reason I didn’t mention this before is because going off your medication without your doctor’s supervision can be very dangerous. I should have called my doctor when I decided to stop taking the medication. This could have been a medication that I needed to be go off slowly. I could have harmed myself. If you feel you are taking a medication you feel you need to come off of, please discuss this with your doctor before you stop taking it. Do this under your doctor’s supervision. I did not do this like I did. I was irresponsible.
I soon had an appointment with my neurologist, otherwise known as on here as my headache pain specialist, and I discussed this with her. Luckily, I didn’t cause harm to myself, but she did say I should have called her and told her what I was doing, just in case. The drug I was on is not one to play around with. We aren’t exactly sure what happened. It was evident that I needed the drug when I was put on it, I had a lumbar puncture to prove it and when I went on it I felt much better. As I said earlier, normally if I didn’t take it I would have had a very bad headache. We thought it would be silly to put me through another lumbar puncture just to prove I no longer needed it, as that was pretty evident. The hypothesis is that somehow my pressure spiked, (perhaps I was lax in taking my medication…I’ve been known to do that before, especially if I have a vertigo attack, I can’t keep medication down, or I fall asleep from exhaustion and don’t take it….) and I had may have had a “blowout” causing my spinal fluid to drop. I used to have that happen before, but the leaks would heal, the pressure would build back up and the whole thing would happen over again. That’s why I was put on the medication, to try to stop that cycle. This time the blowout may have cause a leak that didn’t heal, essentially causing my own “shunt” but without the surgery. So now I don’t have to be on the medication. Crazy, but that’s all we can think of??? Or maybe my body just regulated its self? It doesn’t really matter, I now feel better without the medication.
This is probably the main reason my headaches are so much better. Again, I still have headaches, both migraines and clusters. The migraines are just much better than they were. I can’t say that about the clusters because they didn’t start until right before this happened. I don’t have a lot of these so far. I’ve had more than I’d like, and I hope they don’t increase.
This could also have helped some of the vertigo, but I don’t know. The only time my pressure changes really cause vertigo problems I have very severe vertigo attacks. I have not been having the horrible vertigo attacks, the kind that where I spin for hours and lose all bodily functions, but I haven’t had those in a while. I have been working hard to control those attacks. That’s part of another thing I’ve changed…something I started changing before the whole medication things happened…but I wanted to tell you about this first. So, to tell the truth, I really don’t know if this has helped the Meniere’s symptoms or not. Mainly, I think it helped the horrible headaches.
Now there is a chance that eventually this leak may heal and my CSF pressure will once again build back up and I will have to go back on this medication. I sincerely hope this is not the case. The medication that is used for this, is not a friendly drug. I hated it. Side effects…ugh. Again, another reason why I didn’t mention this, I knew there was a very real possibility that it would be a short lasting “fix”. Now after 3 months, I’m a little more optimistic.
There are TWO other major things I changed that I believe have caused major life/health transformations.
One of is my Diet. (This will be Part 2 of the Feeling Better Series)
One of is studying Mindfulness Based Stress Reduction…this is the best thing I’ve ever done for myself! (This will be Part 3 of the Feeling Better Series)