I have a question for those of you who have been hit hard with vm (ie. unable to work, house/bed bound, horrible dizziness, head pressure, vertigo - pretty much unable to function normally) in the past. For the past two months I’ve been bed bound with a shower being my big activity of the day due to horrible dizziness. What were the first signs your meds were starting to work? I’ve been on propranolol for a couple of weeks and I’m noticing that I’m getting some “settled” periods (ie. as long as I lie quietly my head doesn’t swim, dizzy, etc.), where for a bit I actually feel some physical/mental relief, of course as soon as I move it comes back and the majority of time I feel “unsettled” (ie. the dizziness, buzzing, head pressure, etc. is there no matter how still I lie or what position I’m in). I’m really hoping its the drug starting to work and I’m wondering if some of you experienced the same thing when your meds started to work? Reading the posts I know it’s a gradual process, but hurry up already, haha!
On a different note I’ve had an MRI done and everything looks ok, although the neurosurgeon is concerned that my cfs is not flowing properly due to scar tissue I developed after my chiari malformation decompression surgery in 2004. I really do not want to go back under the knife, so I’m praying that the “settled” episodes I’ve been having are a dawn of light and will only get better. How funny that I’m actually hoping that its vm causing all this!
Hi Ellen, i’ve been where you are and am a little more mobile now, although coming off amitriptyline which hasn’t helped - and moving onto propanolol at only 10mg then increasing to 40mg all at night. I can’t encourage you enough to make sure you get out for one walk a day - even if it’s only to the end of the road and back. This is a way to tell how you are progressing, as well as keeping your brain moving and working to get towards recovery.
Feel free to spend the rest of the day lying and watching movies, i know how it is - and rest is very important. But moving and keeping your head and neck moving is also important, otherwise the brain doesn’t learn to re-train itself.
Good luck, and hang in there. This comes in waves, and with every wave is a little improvement, even if you don’t notice it. I haven’t had any medical relief yet, but over time, i have become more used to things, as well as having some slight naturally aided improvements. Even at my worse, i forced a walk in.
Loads of luck,
I am bumping my response up in the hopes that you will read it.
that’s really great news. I am really happy for you
Are you back to pretty much normal (including the dizziness)?
Finally, was your Lyme test positive through the regular labs like Quest or LabCorp or were they negative?
Did you end up having to go through Igenex for a diagnosis?
Thanks for responding.
I wish you the best health going forward.
Sorry I didn’t reply sooner. I remember how much this website was a life line for me when I was sick, so I apologize I didn’t respond sooner. I was hospitalized after getting sick and my neurologist did perform a standard Lyme test, which came back negative. A decade ago I had chiari malformation surgery, so the general thought from the neuro-surgeon was that something was going on with that and scar tissue was pressing on nerves. My neurologist had the other opinion that I had a constant vestibular migraine. The neurosurgeon wanted me back on the operating table to clean out the scar tissue and maybe see if my patch needed to be moved (in the chiari surgery they removed the back of my skull and put a patch on to give my cerebellum more room), whereas my neurologist wanted to try botox. I was so sick that I knew the operation would kill me (I know that sounds dramatic, but I was so weak and sick I could barely move). So, we decided on the botox and I was discharged after. I was so sick when I went home that I literally wanted to go outside and just fade away (it was winter. No I was not suicidal, but I did want to die - there’s a difference). One of the nurses from my small town I had seen in the hospital told me about a practitioner who treated people with Lyme (she herself had seen her and gotten better after having so many symptoms similar to mine). I knew my Lyme test was negative, so I didn’t think she would be able to help me but I was so desperate at this point that I did go see her. I believe the lab was Isagenix, but in all honesty things have to be sort of done under the table here and I was literally so out of it, just going to the appointment was so hard for me). I had a mixture of traditional and alternative treatments. Through both I found that the natural treatments seemed to help the most. I also learned about the MTHFR gene that a lot of people are missing which is why they stay so sick even after killing the Lyme and also that Lyme likes to “hide” for better lack of a word and form bio-films that protect it from anti-biotics. I also cleaned up my diet big time (even though by north american standards I would have been considered pretty healthy). I cut out all sugar, processed foods, and ate mostly vegetables, fruit, and meat. It was summer when I finally started to see results so I would sit outside in my own “sauna” sun in heavy sweats and sweatshirt, to sweat and detox, did skin brushing, juicing. My practitioner didn’t really push the supplements (except for the Lyme killing stuff), so I didn’t take too many pills, just a good multi, magnesium and a pro-biotic. Anyway, I am so much better, I’m working again, driving, walking, etc. Things I never thought I’d do again I’m doing. So maybe if you’ve tried all the traditional routes, it’s time to think outside the box and look at other possibilities. The thing is with everything, different things work for different people, but there’s lots of Lyme support groups out there if you want more information to help you on your healing journey and there are things you can do to help yourself. Hope this helps!
thanks so much for responding - I didn’t mean to pressure you to respond, I wanted to make sure that you saw my note, that’s why I bumped it.
I really am happy for you.
My Lyme test came negative as well (the traditional one). I keep getting mystery rashes since just about the time the migraines began - am wondering why my immune system seems to be a little off. But frankly, I don’t know whom to trust to “treat me” in terms of naturopathic doctors since there are so many quacks or well-intentioned but incompetent people.
Can you tell me a bit about the MTHFR gene? Is there a test for it? I had Vitamin B6 toxicity around the time that this started as well (the neurologist tested me and I had toxic levels) and one thing that has been popping up since I started reading up on B6 toxicity is the MTHFR gene. Did you get tested? If you were deficient in it, is there a way to make up for it?
Thank you so much, I really appreciate your help.
Glad I can help. I have no idea if I have the MTHFR mutation or not (I’m pretty sure I do though), since I was never tested for it. I believe the 23andme test will determine if you have it or not. Basically, I try not to dwell on anything too much - kind of like so what if I have it, I’ll just do everything I can to help my body detox (In a really over simplistic nut shell the gene mutation doesn’t allow your body to detox easily, so everyday toxins that should be dealt with easily by our bodies build up) and that’s that. Here’s a website that talks about it Methylation 101, with Dr. Amy Nett | Revolution Health Radio where an MD is interviewed and gives a basic run down of the issue. It’ll give you a good overview to what it is. His website also has a number of steps you can take to help increase methylation. Hope this helps!
I actually was on Chris Kresser’s website earlier today . Thanks for the link.
I will try to detox, too, you inspire me to clean up my diet a bit more (even if I eat mostly organic and am on the migraine diet anyway).
I am sorry to keep bugging you, but I am almost done doing so . One question I have, is: do you think you had Lyme and treating that was what made you better OR do you think the treatment you got from your practitioner that helped you detox was pivotal to your improvement, even if you might not have had Lyme.
The other question is, did your treatment include (but was not limited to, I understand) RX antibiotics that are used for Lyme?
Finally, are you still following a strict “detox” type of diet with no sugars? How about grains?
Thanks, Jill - I know you don’t have to help and I appreciate your time and effort to do so.